tag:blogger.com,1999:blog-84509184099916614242024-03-13T22:13:13.335-05:00Troubles McSteansWorld's Greatest Detectivemcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.comBlogger206125tag:blogger.com,1999:blog-8450918409991661424.post-29674544388583494732023-10-17T20:22:00.004-05:002023-10-17T20:23:56.224-05:00October Update<p>So.</p><p>Today I went in for a couple of procedures that I have known were coming for a few months now. For those not up to date, I have long had cardiac issues stemming from my even longer-term kidney issues. For those who <i>are </i>up to date, forgive me for repeating myself a bit. </p><p>Luckily until this year I have not had any symptoms. This spring I started feeling bad. </p><p>Shortness of breath, a strange scratchy sensation in my chest, coughing, and just running on an even lower level of energy than usual. In July I had a left heart catheter. At that time my cardiologist determined that my lower left ventricle was working extra hard to keep blood out of the upper ventricle and by turn out of my lungs. This is referred to as <a href="https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/mitral-valve-regurgitation#:~:text=What%20Is%20Mitral%20Regurgitation%3F,blood%20back%20to%20the%20heart.">Mitral Regurgitation</a>.</p><p>The plan was for me to pull as much fluid as possible at dialysis to relieve some of the pressure in my heart. I did start feeling a bit better due to this action in the past couple of weeks, but we still needed to go back in and check that pressure under the best possible circumstances.</p><p>The first test I had performed today was a <a href="https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/transesophageal-echocardiogram">Transesophageal Echocardiogram</a>. It's where they stick a transducer down your throat to look at your heart and lungs. For me this test was super easy. They use the same sedation as used for a colonoscopy, so the last thing I remember is the anesthesiologist instructing, "take a deep breath if you feel stinging through your IV."</p><p>This test would have been a breeze had it not been for a self-inflicted wound. They had strapped a plastic pulse oximeter snuggly to one of my left fingers and apparently before I had regained full consciousness I managed to scratch my left eyeball with the plastic. Cool.</p><p>Next was a <a href="https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/right-heart-catheterization">right heart catheterization</a> (to this point I had only had the left side catheterized) which would gauge the pressure of the heart (that "how hard is it working" question).</p><p>Afterwards, Dr. Levy came to talk to me and Ryan and my dad. Though the lower level of fluid in my body was apparent (we did our job on that front), the pressure in the heart had not changed. </p><p>So what's next? </p><p>The most recent treatment for Mitral Regurgitation is <a href="https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/heart-and-vascular/heart-valve-disease/treatments-and-procedures/transcatheter-mitral-valve-replacement#:~:text=TMVR%20is%20a%20minimally%20invasive,and%20replace%20the%20mitral%20valve.">Transcatheter Mitral Valve Repair</a> to basically clamp the valve so the opening is smaller. It's minimally invasive, not open heart surgery, but I would need to be in the hospital at least overnight.</p><p>This option seems very doable to me. I'm going in a week to the Mitral Valve clinic to see if I would be a good candidate.</p><p>What Dr. Levy said next, however, shook me to my core. If the Mitral Valve Clip doesn't help and I start to feel worse we would need to go straight to exploring a heart transplant.</p><p>He had no more tricks up his sleeve for someone like me with a weakening heart. I had thought somehow this option would be five steps and years down the line, if ever. Dr. Levy himself had never even mentioned it before.</p><p>I'm trying not to get ahead of things and take it one step at a time. Hopefully the valve repair will work. But on the other hand it can take years to get a heart transplant so you don't want to wait too long if you sense it will be needed.</p><p>So yeah, it's been an overwhelming day. I still can't see very well out of my left eye that I mauled, but it at least feels better. Andre is giving me his full attention by demanding snuggles. And Ryan bought me a cheeseburger and chocolate shake on the way home (my cholesterol is very low, y'all, don't scream at me). </p><p><br /></p><p><i>*I'm sure there are 1000 mistakes in this post and there are parts that don't even make sense. I had a lot of sedatives today and my mind is spinning. I just wanted to get it out there because I know people have questions.</i></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com2tag:blogger.com,1999:blog-8450918409991661424.post-74084750732034911262023-08-01T11:08:00.001-05:002023-08-01T11:15:43.200-05:00Cardiac Update Update<p>This is just a quick update on my cardiac post from last week.</p><p>Yesterday morning I had a follow up appointment to discuss the results from last week's catheterization and to make a game plan for the future.</p><p>I mentioned that Dr. Levy wanted me to pull as much fluid as I could tolerate at dialysis so that I would essentially dehydrate myself and make sure there was no fluid to back up into my lungs. That is the plan for the next two months. I may have already met this goal as I have been pulling an extra kilo (2.2 lbs) of fluid this past week during treatments and last night I woke up with a foot cramp - a sign you are pulling too much fluid. </p><p>At the end of September I have a follow up appointment to reassess and to schedule another catheterization. After that we may do a transesophageal echocardiogram. I'm not sure why that is different than the cath in terms of gathering data, but it must be. And yes, that means they stick a transducer down your throat. Trust me, don't Google it, but just know that is what sedation is for.</p><p>The two surprising things about yesterday's visit were that:</p><p><span> 1. He didn't mention a PET scan at all.</span><br /></p><p><span><span> 2. His description of the problem with my left descending ventricle sounded different than it did last week.</span><br /></span></p><p><span><span>Maybe he was just going into more detail yesterday, but he seemed to be describing more of a valve issue. He said the lower left artery wasn't closing all of the way when it needed to and was letting blood seep into the upper ventricle. A possible solution that was mentioned was going in catheter-style and putting clamps in.</span></span></p><p><span><span>Look, I am not giving the best explanation of anything we discussed about the ventricle. Honestly the whole time he was talking about it I was trying not to throw up because it sounded so gross. I would have made a terrible surgeon.</span></span></p><p><span><span>Basically my takeaway was this: there is a plan and none of it sounds supremely scary. If we do end up proceeding with the clampy procedure, it's at least not super invasive. No open-heart surgery, which is what I was initially thinking. For now, anyway.</span></span></p><p><span><span>Oh, and I haven't been short of breath in a week ever since I took off more fluid at dialysis. Just excessively tired. I'll take it.</span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgw9pgzs3fN321fTiKGackCnCivJfZeiR3ClPx2gaiepm_1dODfkbqES_TW5-hoM5khFT-jVQ8XM9a1aLGj25EQcAdzi5vscltd3rX2pMa4uCm7YhWoQV14_1hNnZ6Obln36yVCUwrHpHa507L68HwsJKZItLdRseHsX_DI_NNu_Iqg2AezWtyK43EsrRo" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1728" data-original-width="3072" height="180" src="https://blogger.googleusercontent.com/img/a/AVvXsEgw9pgzs3fN321fTiKGackCnCivJfZeiR3ClPx2gaiepm_1dODfkbqES_TW5-hoM5khFT-jVQ8XM9a1aLGj25EQcAdzi5vscltd3rX2pMa4uCm7YhWoQV14_1hNnZ6Obln36yVCUwrHpHa507L68HwsJKZItLdRseHsX_DI_NNu_Iqg2AezWtyK43EsrRo" width="320" /></a></div><br /><p style="text-align: left;"><span> </span><br /></p><p><i>A special thank you to everyone who read my last post. I got so much wonderful feedback and support. It truly helps me to do the things I need to do that I don't want to do.</i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-16244633604121851022023-07-26T08:55:00.004-05:002023-07-26T09:14:54.171-05:00Cardiac Update<p>This is not part of The Diagnosis, but I'm sure I'll incorporate it at some point. I wanted to document yesterday (well really the past few months) for myself, but also to have an easy thing to point to when anyone asks what's new with me.</p><p>I believe when promoting the last chapter of The Diagnosis (Matters of the Heart: the Second Part), I described it as "wrapping up the cardio portion of the story". Something in the back of my head told me not to phrase it that way, that I was tempting fate, and yet I did it anyway.</p><p>Friends, always listen to the back of your head. I am indeed not done with this cardiac mess.</p><p>Sometime starting last spring I started experiencing occasional shortness of breath along with some hard to define other symptoms and more pronounced fatigue. (I am a mostly functional human being, but I do require lengthy naps in the afternoon to <i>be</i> functional.) At the time, I chalked it up to seasonal allergies or the seasons changing. It is not uncommon for me to experience spells of exhaustion and have a couple of days where I don't feel well. </p><p>This was different. It didn't go away. In fact, the symptoms seemed to get worse. </p><p>I have been visiting my cardiologist for over fifteen years. In that time I have never experienced any of the symptoms he questions me about during my visits. Shortness of breath? No. Chest pains? No. Swelling? No. I was what you call an asymptomatic patient. Which is good! It means I was just placed in the "closely monitoring" category. Visits every six months, yearly tests. I even had a defibrillator placed five years ago for good measure. At the end of my appointments, Dr. Levy would always instruct that if I <i>were</i> to experience symptoms I should call his office immediately.</p><p>Wanting to be a good patient, but more importantly because the symptoms were scaring me, I made an appointment. We had not performed the yearly echocardiogram this year and I thought at least he could order that.</p><p>Dr. Levy was indeed concerned by my report. He ordered the echo, but wanted to also perform another stress test. Those of you who have kept up with my cardio story so far might recall that I would rather eat a bowl full of slugs than do another stress test. I made a face and on the fly suggested another option.</p><p>"Would it be possible to bypass the stress test and just jump straight to the cardiac catheterization?" I suggested this knowing that was the next step after stress testing.</p><p>He thought about it for exactly one second before nodding thoughtfully and saying, "yes, we could do that."</p><p>I had dodged that bullet.</p><p>Still though, a catheterization is no walk in the park. I've had them before and they are fine, but it takes up the whole day, AND the day of Ryan, who has to be there for transportation, company, and moral support. ALSO I made my dad come in the afternoon for company and moral support. And feeding of ice chips since I had to lie flat on my back after the procedure for 4 hours.</p><p>There was a slight inkling of worry in the back of my mind that they<i> </i>actually <i>wouldn't </i>find anything and I'd be back to square one with the not knowing what was wrong with me. It might sound absurd to want to find something wrong with your heart, but all of us that have had a mysterious ailment know it at least feels better to understand the source and to have a game plan.</p><p>Mystery was absolutely not the case here. The test showed I had some fluid backing up into my lungs thanks to my heart not functioning as well. This would explain the shortness of breath and occasional coughing fits. The game plan for this complication is to try and lower my dry weight at dialysis and make myself as dehydrated as possible so there <i>is</i> no fluid to back up. This is doable. </p><p>The other big problem is, the already damaged/diseased part of my heart (which in my case is the left descending artery, or as Dr. Levy helpfully described: the most important artery) looks even worse now. </p><p>So where does that leave me? More testing. We are not done. Next up is a PET scan to determine the health of the tissue around that artery and judge the possibility of surgery. Dr. Levy's concern in the past about attempting surgery (which he didn't want to try while I was feeling good and asymptomatic) was that he might make things worse. If you read between the lines of what he was telling us yesterday, things looked so bad now that he couldn't possibly make it worse. So surgery is now on the table.</p><p>Not great news, and I hate to be a downer, but I <i>am </i>glad that I'm not crazy and that there is a plan moving forward. As Ryan said in his pep talk during our post game review last night - this is what we do. This is just another hurdle and we'll get through it. </p><p>His use of the word "we" means the world to me. We are both going through this. We were both stressed out the past couple of weeks and were both completely wiped out last night. I might have a difficult journey ahead of me, but it reminded me that I am not alone, and that makes all the difference.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOYV4_YOY1Os6Ui5fHLbDjyaRcSyz432uYho5TMbpoR5pg99JXjdXDPkpeSbsKLpVTieYFEW9S1yqD1WNdm0xIl4YrXvXYLJyCnTAyM4uh2H1ZDKenEugxKW7GDssuixGzH-nr4lZOUuY_xR31Xf6id-4ZGRFC5rCX40v-jzClpUjs10kTIhNyQA1ZoVw/s2048/hawks.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOYV4_YOY1Os6Ui5fHLbDjyaRcSyz432uYho5TMbpoR5pg99JXjdXDPkpeSbsKLpVTieYFEW9S1yqD1WNdm0xIl4YrXvXYLJyCnTAyM4uh2H1ZDKenEugxKW7GDssuixGzH-nr4lZOUuY_xR31Xf6id-4ZGRFC5rCX40v-jzClpUjs10kTIhNyQA1ZoVw/s320/hawks.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><i>The hawks are not what they seem</i></div><br /><br /><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-74460420653630477652023-05-07T15:58:00.008-05:002023-05-07T16:41:48.207-05:00Matters of the Heart, the Second Part<p><i><a href="https://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Previously on The Diagnosis</a></i></p><p><br /></p><p><i>*This chapter jumps a bit in time. It is in chronological order, but continues right up to the present. I wanted to package all of the cardiology portions in one place for easier reading. After this we will return to 2008 and finish the story according to the timeline from there. </i></p><p><br /></p><p>After my denial of a third kidney transplant I was forced to take a serious look at my heart health. I honestly had no one to blame but myself about how much I had ignored it until that moment. In my mind I was a kidney patient. There was no room for anything else. Go ahead, question me about Focal and Segmental Glomerulosclerosis! Want to know about Plasmapheresis with Albumin Exchange? Ask this gal right here. Have a question about renal transplants or dialysis? I'm your huckleberry. </p><p>Ok, McSteans, but what's going on with your heart?</p><p>....<span face="Roboto, arial, sans-serif" style="background-color: white; color: #4d5156; font-size: 14px;">¯\_(ツ)_/¯</span></p><p>I knew I was on maintenance blood thinners (Coumadin) for blood clotting, had experienced a silent heart attack prior to going on dialysis but attributed that to my kidney disease. In Austin I routinely saw my first cardiologist after being released from the Heart! Hospital!, but all he did was monitor my Coumadin and chastise me for continuing to take my migraine medication. I viewed it as such an extraneous part of my care that when we moved to Arizona I didn't even bother getting a cardiologist. My nephrologist, who was ordering weekly blood tests anyway could easily keep an eye on my blood thinning levels.</p><p>When we moved back to Austin my new nephrologist, Dr. Miller, was having none of that. He agreed to monitor my Coumadin, but insisted I follow up with his cardiologist buddy Dr. Levy.</p><p>Sigh. Fine. It just felt like extra homework. If my heart troubles were stemming from my kidney disease, shouldn't treating that disease help slow whatever was happening with my heart? I also was no longer on my immunosuppressants for the transplant that had fritzed out. That should surely help as well.</p><p>My heart problems were actually well documented, but I had done such a great job of shoving my head in the sand and insisting I was just a kidney patient I refused to acknowledge them or give them a name.</p><p>So let's give them a name.</p><p>The heart problems:</p><b>Ischemic Cardiomyopathy, </b>or the heart's decreased ability to pump blood brought on by a weakened heart muscle.<div><br /><b>Clotting disorder, </b>which has been previously discussed.<br /><p style="text-align: left;"><b>Coronary Artery Disease, </b>yikes. This can mainly be found in my left descending artery resulting in sluggish blood flow.</p><p><br /></p><p>So yeah, I had heart disease too. And since my dialysis routine had settled down into a not-enjoyable yet "whatever" part of my life, it was time to focus on cardiology.</p><p>First up was an echocardiogram and stress test. Echocardiograms are no big whoop. It's basically 45 minutes of lying in a dark room with a tech rolling a goopy ultrasound doohickey around your heart area. Occasionally they'll turn the sound on and you can hear your heartbeat. It's actually quite peaceful.</p><p>I came to my first stress test prepared and determined to do the treadmill version. Surely I could walk on a treadmill for as long as they needed to get test results. No dice. The idea behind a stress test is to find out how well your heart functions with an elevated heart rate for a sustained amount of time. In my case, before my pulse could climb to that level my blood pressure would start to skyrocket, which wasn't good for the test or for me.</p><p>I would have to do the chemical stress test again. The test itself wasn't that bad that day, but I was in that office forever. Poor Ryan had played chauffeur and was sitting in the waiting room that whole time. If I had known we'd be there from morning until mid-afternoon I would have sent him away and called when I was done.</p><p>The results were not great. My heart's "decreased ability to pump blood" was made apparent by my Ejection Fraction. The EF is specifically the percentage of the total amount of blood pumped out of your heart with each beat. A healthy heart maintains an EF of 50 or above. Anything below 40 is concerning. </p><p>I don't remember the exact number of my EF and my digital records don't go back that far, but it was definitely below 35. </p><p>Dr. Levy was quite distressed. He had me schedule a series of tests that would determine our next step. </p><p>I went to the Cardiac Catheterization Lab where they could get a better look at my arteries. The Cath Lab is located in the hospital because they have to thread a catheter up through your groin to your heart. If there was a particular area where plaque was building up and causing weakened blood flow they could possibly place a stent to open up the vein.</p><p>No luck. You know those reports that say a leading cause of fatality in women is due to heart disease? One of the reasons is that it's harder to treat. This is because women tend to have more widespread and smaller build up in smaller vessels. There's a lower chance of being able to find a large enough build-up of plaque in one area for placing a stent to make much of a difference. </p><p>Our only path of treatment would be to continue a regimen of oral medications for therapy.</p><p>The last test to undergo was an electrophysiology study. If they couldn't improve my heart function with stents, the least they could do was be prepared should I go into cardiac arrest. The study would determine how much of a risk that was. In the Electrophysiology Lab they mess with the rhythms of your heart and then observe how easy it is for your heart to course correct and return to a natural rhythm.</p><p>Apparently with my heart it was not so easy. They had to shock it again to get it back to normal.</p><p>Though this result was of some concern, Dr. Levy felt like I was still in that fuzzy area of not quite in a dangerous situation. The likelihood of a cardiac event was around 1%. The question was if that was a number I could live with. If not, he wanted to place an ICD (Internal Cardioverter Defibrillator) just in case that 1% should happen. He left that decision up to me.</p><p>I swirled it around in my brain for a long time. Did I really want <i>another </i>medical doodad in my body? This was a pretty serious doodad at that. The biggest argument against it in my mind was that I felt pretty good. It's pretty hard to talk yourself into something that is a lot of work to get it in place for no obvious improvement. Like getting your foundation fixed.</p><p>I chickened out. I basically told Dr. Levy I wasn't ready for that big of a step. To my surprise, I didn't get a lecture or a stern look. He accepted my decision and said we would need to continue to test me once a year.</p><p>Every year I would go in for an echocardiogram. No biggie.</p><p>Every other year, or any year in which the Echo gave a borderline result, would necessitate the stress test.</p><p>The chemical stress test became the bane of my existence. For some reason my first two stress tests hadn't bothered me at all. They made me feel a little funny during the actual injection, but it was a feeling that quickly passed. I guess you get two freebees before it starts hitting you for real.</p><p>I signed my dad up for Stress Test Moral Support Captain/Chauffeur. My dad has an excellent, calming bedside manner and is always up for helping out where he can.</p><p>You are at the clinic all morning and you're not allowed to eat or drink anything past midnight. Most of the morning is spent in a waiting room with all of the other people there for heart tests. </p><p><br /></p><p>The agenda goes something like this:</p><p>STEP ONE: Get an IV placed. This can be easy or difficult, depending on how cooperative your veins are feeling that day. I will note that I've had the same tech every single time I've had this test run. He is better than most at placing IVs.</p><p>STEP TWO: Have dye injected into the IV and lie in a CT Scan so they can observe your heart pre-test.</p><p>STEP THREE: Go back to the waiting room for an hour.</p><p>STEP FOUR: The stress test. They inject some bonkers chemical that, for the next two minutes will make you feel like you're having an involuntary panic attack. Which is essentially what it is. Like the treadmill test, they want to watch your heart as it is working harder. Here they have to simulate that. It does not feel great.</p><p>For me, nausea would set in. I would need to close my eyes and breathe slowly to ensure I didn't barf on anyone. It was a horrible feeling.</p><p>STEP FIVE: Return to the waiting room. You're free to eat or drink then. The most I could do was nibble on a snack bar, but honestly the best remedy for that yucky feeling is coffee. </p><p>STEP SIX: Repeat the CT Scan. How does your heart look post-procedure? I always imagine my scan just showing my heart holding a sign that says, "NOPE."</p><p>STEP SEVEN: Go home. Feel like crap for the rest of the day. I could never shake the headachy and nauseous feeling even after going home, eating, and napping. It would take a good night's sleep to fully clear the yuck from my system.</p><p><br /></p><p>A funny thing happened in those ten years of maintenance and testing - absolutely nothing. My ejection fraction mostly remained in the mid-30s and even went up to 40 at one point. I think my cardiologist was rather shocked by this result. I mean, I was always tired, but had adjusted to living with that level of energy. I did exercise, but I was still a dialysis patient with reduced heart function. Still, I had no symptoms such as shortness of breath or chest pains. Maybe it was my efforts to stay healthy, maybe I just got lucky, maybe a little of both.</p><p>Exactly ten years after my dismissal of the ICD idea my cardiologist decided it was again time to take a closer look. Back we went to the Cath Lab. Though there had been no significant change, Dr. Levy came out of the lab still concerned about that tiny risk of heart attack. He once again brought up the defibrillator.</p><p>I don't know what it was about his tone that had me considering it more seriously this time, but I did. I knew I was older and didn't want to play with fire. Sometime in the past ten years, especially since losing my mom, having been on the sideline for someone else's physical decline, I had started considering everyone else in my life my decisions would impact. I acknowledge I should have been doing this all along, but I was an immature young adult. As humans I think our selfishness fades as we mature and experience life. For me in this particular situation this mostly meant considering Ryan and how this would affect him. What would I want him to do if our situation was reversed? </p><p>I would want him to get the damn defibrillator.</p><p>I got the damn defibrillator. Mine is a slightly more modern version than the traditional chest ICD and is called a <a href="https://www.cleveland.com/healthfit/2012/11/new_implantable_defibrillators.html">S-ICD</a>. It sits on my left side under my arm. On the plus side, it's supposed to last longer, be better for my fistula, and be less likely to get an infection. The bummer is - it's a bigger device, and feels kind of like a hockey puck. The first couple of weeks post surgery were incredibly painful due to swelling, but after a few weeks the swelling subsided and there was still a small disk on my side. </p><p>Eventually I got used to it and only think about it from time to time. I still can't sleep on my left side. It makes wearing bras pretty uncomfortable, but I've been home a lot in the past few years thanks to our friend Covid and home has become a bra-free zone. There's this transponder that sits on a shelf above my bed that once a week will collect data from my device and send it to the doctor's office. Other than that the S-ICD just sits under my arm, looking like a hockey puck and lying in wait to shock the hell out of me.</p><p>All jokes aside, I am glad I got it. For years we had this portable red box with an external defibrillator in the house, but that wouldn't work 100 percent of the time because 1.) I'm not always at home and 2.) I'm not always at home with someone else. It's nice to know that in case of an emergency no matter where I am this thing could possibly save my life.</p><p>Also I've been told I don't have to do the stress tests anymore, so. Huzzah!</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF1IUjzRYxz-NtgJ2Ny8rgOyWtCDBDBWSzY9Z6ItzaDCLVSl2kVfT4QxotrlsjuXyXMbnEBXxEDuZs28j67IrjKFiOBvcRudm6rKqqLPxS_fUKdyDX2t8hIGc7Evw9134NCKMp2Vj7a2SYhdAqXVjFoVKcdagZ7xxMpsDdcj1XvaKJRm9n87yZ01iT/s1500/Get%20Pumped%20Up%20About%20Heart%20Health%20(Banner).png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="500" data-original-width="1500" height="107" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF1IUjzRYxz-NtgJ2Ny8rgOyWtCDBDBWSzY9Z6ItzaDCLVSl2kVfT4QxotrlsjuXyXMbnEBXxEDuZs28j67IrjKFiOBvcRudm6rKqqLPxS_fUKdyDX2t8hIGc7Evw9134NCKMp2Vj7a2SYhdAqXVjFoVKcdagZ7xxMpsDdcj1XvaKJRm9n87yZ01iT/s320/Get%20Pumped%20Up%20About%20Heart%20Health%20(Banner).png" width="320" /></a></div><br /><p style="text-align: center;"><br /></p><p style="text-align: left;"><i>Next up: Lady Business</i></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><i><br /></i></p></div>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-33629977100724212452023-01-29T18:38:00.003-06:002023-05-07T16:00:07.550-05:00Transplant Three?<p><i><a href="https://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Previously on The Diagnosis</a></i></p><p><br /></p><p style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ02cs815ySBdQRUgy5NZC9Wf11dTVBZhnL1wbZIYjEwnb2sKeeGaZsfzPxbJ2VHxcILqYmqm9nfQ7aKrRDuzPrrUrgefU2Q6cIESJnb5Cjflgm4BjIa9c-fgKQZy0E0cXetUMkV0il-8o6F9KYCEyaBll8xg2yr2x0AU4ccVKz8lsZM6YX2ykobl7/s2830/questionablekidney.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2830" data-original-width="1817" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ02cs815ySBdQRUgy5NZC9Wf11dTVBZhnL1wbZIYjEwnb2sKeeGaZsfzPxbJ2VHxcILqYmqm9nfQ7aKrRDuzPrrUrgefU2Q6cIESJnb5Cjflgm4BjIa9c-fgKQZy0E0cXetUMkV0il-8o6F9KYCEyaBll8xg2yr2x0AU4ccVKz8lsZM6YX2ykobl7/s320/questionablekidney.jpg" width="205" /></a></p><p><br /></p><p>Our decision to move back to Austin infused into our lives a sense of hope long forgotten. The four years in Phoenix had started to feel like a trap, and with my declining health there was seemingly no way out. Dialysis had brought stability to our lives which made escape possible.</p><p>We were originally going to wait until Ryan found employment back in Austin to begin the process of moving, but no company wanted to take a chance on someone who did not already live in the area. </p><p>One night we were discussing our predicament when Ryan just looked me straight in the eyes and asked, "what if we just pick up and move?"</p><p>It would be a gamble, to relocate without the certainty of an income on the other side, but if we didn't take a chance we might not ever get back to Texas. </p><p>"Let's do it," was my immediate response.</p><p>We set a goal of September for the move and started contacting realtors in Chandler and Austin. Austin was easy as we had a friend who was a newly minted realtor in the area. In Phoenix we located a lovely woman named Pat to help us unload the Arizona ranch.</p><p>There were two major selling points in our favor. One, though the housing market was just starting to decline, our house had still almost doubled in value since we bought it. Two, those cow farms surrounding the neighborhood and gracing us with their scent that were "definitely going to be gone in 6 months" had finally disappeared in time for us to sell. </p><p>Ryan and I flew to Austin for a few days to scout homes with our friend Kerry the Realtor in the south Austin area. We had lived there before leaving and though we couldn't afford to buy anything north of Ben White Blvd., there were plenty of options to the south. </p><p>While we were there we stayed with Jason and his pup, Cassidy. I had the opportunity to test-drive a dialysis clinic near his house. I was pleased with the facility and still dialyze there today. In fact, the two techs I remember meeting that day still work there and are two of the nicest, most skilled dialysis technicians you will ever meet. They won me over.</p><p>After touring homes for a day and bickering a bit about clashing personal preferences, we settled on a mid-80s abode about two miles south of Jason's house. It needed a bit of work and so with our offer we requested $5,000 for repairs. Seemingly reasonable for a kitchen in which the oven door wasn't "technically" attached.</p><p>There was absolute silence on the seller's end. After a week they responded with a decisive, "no thanks."</p><p>Instead of negotiating like normal people, they were just flat out offended that we had dared ask for repair funds and took their chances elsewhere.</p><p>This put us in a panic because we had already sold the house in Chandler. We had one month to find a place to live as we were scheduled to leave Arizona on September 20th.</p><p>A stroke of luck had Ryan flying back to Austin for a job interview. A house had opened up in a new neighborhood we had already toured and liked, so armed with a disposable video camera purchased at Walgreens, Ryan and Kerry looked at the house and took video for me to see. I wholeheartedly approved so we put down an offer.</p><p>It was essentially a brand new home. The neighborhood, Grand Oaks, had just opened two years earlier and the owners had never planned on staying in the house. This meant they had made virtually no changes, so aside from some nail holes in the walls it was like moving into a brand new home.</p><p>September 20th rolled around and we were all packed and ready to leave. Doug and Jeff the Cat accompanied me in the Camry while Karen and the dogs were Ryan's passengers in the Subaru. It was a mostly uneventful drive minus everyone being punchy at the end of both days and Doug and I getting no sleep thanks to Jeff the Cat patrolling the edge of the hotel room in El Paso <i>all night long</i>.</p><p>Ryan and the pups stayed with Jason for a few days until we could officially move into the new house. Doug had taken a few extra days to help out and the two of us were camped out at the <a href="https://austinmotel.com/">Austin Motel</a> (highly recommended if you are ever in town). Jeff the Cat bunked with local friend Matt and reportedly did not leave the confines of the closet the entire time.</p><p>The new house, once we finally moved in, was much more spacious and "us" than the abode in Phoenix. We each had our own "offices" upstairs and there was a guest room as well. I was overjoyed to be back where there were trees and seasons and friends and family. Jason lived ten minutes away and both sets of parents would join us post-retirement within two years to homes that were each less than an hour away. This felt like home.</p><p>My new dialysis center was also about ten minutes away. While the facility was easily twice the size of the Arizona clinic, I liked the staff and felt comfortable there. </p><p>The only hiccup with my dialysis treatment happened within a couple months of moving back. At the time, dialyzers were reusable and each patient's dialyzer was cleaned between each treatment. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjZ9ZjkrpQYVXSO6QIyyy_5TTjxDaGWanc5emTDOpsrw3TzgJ7DOuh9PJvS1DZWlTKgXTNPA6WXAUy5ksoHmVKSn-tf6Za0v_iZFxPP8pqAv2bAstcVopt9QrFaaBzyXwG8hEFHr1SlRiCVDJBkRVSG8BA1vvk1AdAfpzVePMyamm5tegjvNQzqRAKj" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="800" data-original-width="500" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjZ9ZjkrpQYVXSO6QIyyy_5TTjxDaGWanc5emTDOpsrw3TzgJ7DOuh9PJvS1DZWlTKgXTNPA6WXAUy5ksoHmVKSn-tf6Za0v_iZFxPP8pqAv2bAstcVopt9QrFaaBzyXwG8hEFHr1SlRiCVDJBkRVSG8BA1vvk1AdAfpzVePMyamm5tegjvNQzqRAKj" width="150" /></a></div><div class="separator" style="clear: both; text-align: center;"><i>This is a dialyzer</i></div><br /><p>One day about a month after moving back to Austin I got hooked up to the machine and almost instantly felt something was off. A few minutes later I was overcome with nausea and flagged down my tech to stop the treatment so I could throw up. The techs and nurses conferred and determined that I had formaldehyde poisoning.</p><p>These reusable dialyzers are better for the environment, but they are sterilized with formaldehyde. You know, that horrible smelling stuff that preserved the frogs you dissected in middle school. If the formaldehyde isn't rinsed out completely after the cleaning, it can get into your bloodstream and, well, make you sick.</p><p>About a month later it happened again, though thankfully I identified the signs prior to needing to lose my breakfast. I informed the staff that, environment be damned, I would be requesting a new dialyzer each time or I was leaving the clinic. They agreed. </p><p>Incidentally, reusable dialyzers are no longer used on anyone. At least not at our clinic. Dialysis is a medical waste nightmare, y'all. They throw away dialyzers and tubing for every patient after every treatment.</p><p>In my mind dialysis was a stopgap, a temporary band-aid of a solution. I wasted little time badgering my new nephrologist, Dr. Miller, for information about getting a third transplant. I had already begun the transplant application process in Phoenix; had been vetted through tests, meetings, and already had six months under my belt on the waiting list. It turns out when you move out of state you can get your waiting time transferred, which is very cool.</p><p>Dr. Miller was cautious about getting me a third transplant. There was a reason my first two had only lasted five years each and if I were to pursue another it would be advisable to get in contact with the best transplant facility in the state, which for Texas meant Methodist Hospital in Houston.</p><p>I wasn't jazzed about having to travel so far for all of my appointments and a theoretical surgery, but my in-laws lived north of Houston and could be a home away from home. Plus I <i>really</i> wanted that third transplant, so I was willing to jump through any number of hoops to get one.</p><p>The testing process at Methodist was more thorough than any I had previously experienced. For my first transplant I had virtually no testing ahead of time. I was young and getting a kidney from a family member so that was fairly easy. The second transplant in Austin required some bloodwork and counselling. There was a similar process in Phoenix.</p><p>I would need to be at Methodist for almost a full week. My very lovely and generous in-laws played hosts to me and Melbotis the Dog, who I had brought along for moral support. Karen shuttled and accompanied me to all of my tests and appointments that week.</p><p>Although the tests were more numerous and uncomfortable, I began to think that maybe these workups signified that I would be in much better hands at Methodist. Along with lots of blood work there were individual and group meetings. </p><p>Some of the other patients ended up asking <i>me </i>a ton of questions because of my two transplant-status. It's one thing to hear information from transplant coordinators and another to learn about the experience from someone who has lived it. I liked being able to share my stories with them and I hope it helped.</p><p>One of the tests was designed to gauge the function of my bladder. This test was WEIRD, y'all. They basically filled my bladder with a reverse catheter, then had me wait for as long as I could hold it, then let me "pee" it out. Which, if you've not gone number one in a while is a strange sensation.</p><p>The chemical stress test was the worst. A study that is used in place of a standard treadmill stress test, the chemical version injects a drug into your system that elevates your heart rate. The test wants to find out how well your heart functions when your pulse is high. It basically feels like you're having a panic attack, which if you think about it is kind of what happens. Your heart starts racing beyond your control and you get all sweaty and sometimes nauseous. Not fun.</p><p>In the last meeting of the week, a discussion was had about, "where would a third transplant go?" If you recall from earlier entries, my first two transplants were positioned up front in my abdomen because it's a much easier surgery than slicing through the muscle on your side to get to your native kidneys. I was all filled up with kidneys at this point and if I were to get another transplant I would need to have another surgery ahead of time to remove one of the transplanted kidneys and make way for the latest contestant.</p><p>The surgeon who had done my most recent transplant in Austin, Dr. Caffeinated, still practiced in town. Upon returning home I made an appointment. We chatted a bit to catch up on what was going on with my transplant (very little) and then discussed the operation. A transplant nephrectomy is a fairly straightforward surgery so he was not too worried. The last thing he wanted to check before I left was to touch base with Dr. Levy, my cardiologist.</p><p>Dr. Caffeinated left me in the room by myself to make the phone call. While I was waiting, the cardiothoracic surgeon who originally put in my fistula wandered by in the hallway. I said hello before mentally kicking myself that he might not remember me. It had been at least seven years at that point. He actually <i>did </i>remember me, probably thanks to the four or five times I came in for declots and my lengthy hospital stay that first fall. We chatted for a few minutes and he was very happy to hear the fistula was still alive and kicking.</p><p>Dr. C was gone for an uncomfortable amount of time. When he finally did return it was with a somber expression. I had a bad feeling about this.</p><p>He took a seat and asked me if I had discussed the transplant with Dr. Levy. I thought I had. I did, didn't I? Dr. C said he seemed surprised and was not thrilled about the idea. I was instructed to go have a conversation with Dr. Levy before we could proceed with a transplant.</p><p>My spirits were dimmed, but not extinguished. Surely there had been some misunderstanding. Maybe I could talk Dr. Levy into a green light.</p><p>Within a week I was back at Dr. Levy's office to get answers. I had entirely misread his level of concern. He not only disapproved of the transplant and subsequent transplant maintenance drugs, he didn't want me risking surgery of any kind. Period. Starting with a nephrectomy.</p><p>As I always did with bad news, I took a beat to digest the information and wallow in my discouragement. This was probably the end of the line for my transplant hopes, but I had one final option: a second opinion.</p><p>Look, I had complete confidence in Dr. Levy. He had proved himself an excellent cardiologist and clearly cared about my wellbeing. But that didn't mean I couldn't seek additional information. </p><p>I got the name of a cardiologist in Houston and sent over my relevant medical records. A month later I flew to Houston for the day. Karen once again stepped up to play chauffeur and provider of moral support. My appointment was in the morning and didn't take that long. Once the cardiologist reviewed my chart and spoke with us for a bit he confirmed Dr. Levy's diagnosis, thereby shutting the door on a third transplant. From here on out dialysis would be my only option.</p><p>I don't want to end this on a sour note. The truth is, dialysis has been pretty good to me. I know that sounds insane, but my body was just not happy with transplants. With dialysis I wouldn't be constantly wondering when my disease would return. I wouldn't be on immunosuppressants. I wouldn't have to do plasmapheresis, which made me feel terrible. I wouldn't be in the hospital as much. It would mean a lot fewer surprises for me and most importantly Ryan, who had had his life upended for more than ten years dealing with this nonsense.</p><p>I got into the rhythm of treatment and started to feel like I somewhat had my life back. Things settled down for both of us once our lives were no longer revolving around my medical care. For the first time since my original diagnosis the new normal was actually seeming pretty normal.</p><p><br /></p><p>*<i>Kidney artwork by Ryan J. Steans</i></p><p style="text-align: left;"><i>Up next: <a href="https://mcsteans.blogspot.com/2023/05/matters-of-heart-second-part.html">Matters of the Heart, the Second Part</a></i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-74739550981380142352022-09-08T10:32:00.008-05:002023-01-29T18:41:27.324-06:00Dialysis Two<p><a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html"><i>Previously on The Diagnosis</i></a></p><p><br /></p><p>For many years I was the "Ruiner of Holidays". Of course that's an exaggeration and no one else outside of Ryan, who understood it was a joke, would label me as such. But it's how I felt. I have already detailed the year I brought everyone to San Antonio while I plasmapheresed and the first year in Phoenix when I had a crippling and undiagnosed Sed Rate, but there was also a year in between when I ended up in the hospital right before Ryan and I were set to go our separate ways home for Christmas, delaying our departures a few days. The fall/winter of 2005 took the cake, though, when I managed to bulldoze through each and every holiday.</p><p>My migraines had been so bad that year that they pulled focus from the actual underlying problem, that my second transplant was failing. Pheresis was somewhat slowing the process, but the outcome was inevitable. </p><p>In October I went in for one of my treatments and my fistula wasn't working. It had twisted in my arm, hindering the blood flow. They sent me immediately downstairs to get admitted for surgery. </p><p>The surgery itself was pretty straightforward. The large vein had managed to get a kink and needed straightening. I sadly don't remember the name of the cardiothoracic surgeon who helped me out that day, but I really liked him and would see him again. We'll call him Dr. Amazo because he was awesome.</p><p>Afterwards the on-call nephrologist entered my room in Desert Samaritan with a somber expression. He was a doctor who worked with Dr. Lambda, but it was my first time meeting him. He sat down and delivered the news. My creatinine had spiked and he recommended I go back on dialysis.</p><p>I burst into tears. It remains the only time I completely lost it upon hearing any kind of diagnosis. I was devastated. My memories of dialysis were horrible. An agonizingly long time sitting in a chair not feeling well, extremely strict dietary and fluid restrictions, and a crippling effect on my ability to travel were all reasons I panicked. Also I had already had two transplants. What were the chances I was going to be allowed a third? The possibility that I was staring my permanent future in the face was unacceptable.</p><p>The poor doctor did not know what to do with this thirty-year-old woman suddenly crying. I was embarrassed for losing my composure in front of him, but after the year I'd had it was too much. He left me to think about it.</p><p>The following day I had entered the bargaining stage of grief. I had been doing pheresis once a week. What if we increased that? Why not do three or four? The doctor agreed to try two weeks of intensive plasmapheresis and then reevaluate my labs. He also said if my bloodwork was stable I could go home the next day.</p><p>The next day, a Monday, was Halloween. Ryan and I took a little comfort in knowing we would be home in time to distribute our 3 tons of candy to the neighborhood kiddos. Ryan had also ordered a bunch of ashcan comics to give to the kids, which we were very excited about. Halloween in Chandler was always a delight. It was the first few days of fall in Arizona that didn't feel like your eyeballs were going to boil in their sockets. You could sit outside and chat with the kids and their parents. We were very much looking forward to that.</p><p>My labs didn't come back until three o'clock that day. The doctor made rounds at five, seemed satisfied with the results, and said he would order my discharge. We waited.</p><p>And waited.</p><p>And waited.</p><p>At ten o'clock that night I got my walking papers. We had missed Halloween.</p><p>We called in reinforcements for the intensive rounds of plasmapheresis. My mom flew out for a week to accompany me to my treatments and help around the house. It was always nice to spend more time with my mom and the mom-cooked meals were certainly a bonus. Because she was the office manager at my dad's orthodontic practice she could take time off without getting fired, but a week was pushing it as things around the office were always a bit strained without her.</p><p>The following week my mother-in-law Karen took her turn. Karen and I had always gotten along, but I credit this week as the point where we really got to know each other. She went with me to my appointments, asked a lot of questions there, and we generally just shared stories. I think she got a better understanding of what was going on with me medically and I understood her better as a person. It was good for both of us.</p><p>Pheresis did nothing to slow the decline of my transplant functionality and by mid-November I was back at Chandler Regional ER, this time unable to breathe from fluid overload.</p><p>Having fluid in your lungs is a terrifying feeling and I grew increasingly panicked in the waiting room. Ryan pestered the check-in nurses several times until he convinced them I <i>couldn't breathe</i>. They didn't yet have a room for me but brought me back to the triage area to get some oxygen. It helped only a little.</p><p>Finally getting a room inside the ER (it was an actual room with a door this time), I struggled to find a comfortable position on the bed. The hospital was particularly busy that day and they were having a hard time finding me a room so I could be checked in. I spent hours curled up on my knees facing down as that felt like the only way I could get any air.</p><p>I was admitted. Dr. Lambda came by. Somberly, he told me what I already knew. The pheresis had not worked and I needed to restart dialysis. </p><p>There was no objection from me this time. It's hard to be stubborn or argue when you can't breathe. </p><p>I was set up in a dialysis center in Ahwatukee. Thanks to the brand new highway 202 that ran just south of our neighborhood I could make it there in less than 15 minutes at 6 in the morning; a journey that if using surface streets would take a half hour. </p><p>I began treatment the Monday before Thanksgiving. Serving just 16 patients with one nurse and four technicians, the clinic was relatively small, but it was new and clean and didn't feel cramped. My first treatment went well.</p><p>On Wednesday I pointed out to my technician a dark spot I had noticed the day before that was on the lower part of my fistula. The nurse took one look, said "that's infected," and sent me straight to the hospital.</p><p>Well shit. My parents and Doug and Kristen were all scheduled to arrive that afternoon. We were having Thanksgiving in Arizona again due to my inability to travel on short notice. I was going to miss Thanksgiving.</p><p>Look, I do a lot of complaining in this section about how many holidays I missed. I just want to take this opportunity to acknowledge all of the hardworking medical staff who routinely sacrifice time with their own families to work holiday shifts. It can't be easy, but for what it's worth their presence (for me at least) was and is much appreciated.</p><p>At Chandler Regional I was quickly admitted. The family showed up and started making visitation rotations. Meanwhile, the dark spot was rapidly expanding. My dad and Ryan were with me when Dr. Amazo arrived to examine it. He decided to lance the infection to get a better idea of what we were looking at but also to relieve some of the pressure. Ryan excused himself, but my dad stayed and because of his medical background asked a lot of questions while handing the doctor gauze (with gloved hands). It was very gross.</p><p>The infection was a MRSA (Methicillin-resistant Staphylococcus aureus), which if you're not familiar is the worst kind. We would have to do surgery right away to remove the source and then follow that with intense antibiotics.</p><p>By this time it was midnight - the night of Thanksgiving. While I was wheeled away to the operating room, my dad departed the hospital and Ryan settled down to sleep in a chair in the waiting room while the surgery proceeded to take twice as long as predicted. Then afterwards they switched my room without asking and threw away my flowers. By the time Ryan finally found me he was not a happy camper, but in the wee hours of the night still put on an encouraging face for me and recounted the Suns game I had missed. </p><p>It wasn't until the next morning when I was more alert that I learned what had transpired during surgery. Dr. Amazo determined the damage to my fistula from the infection was so great he needed to remove a section of it then repair it with a vein transplanted from another part of my body. He located a vein in the upper part of my left leg that he felt would do nicely and just....moved part of it to my arm. Which is apparently a thing they can do. I'm still in awe years later.</p><p>Ryan and I had missed Thanksgiving the previous day while the rest of my family were at our house making turkey dinner and taking care of the pets. I know they weren't back at the ranch having a party and were getting back to us as soon as they could but knowing we were missing out hurt my heart a little.</p><p>On Friday my mom arrived with little tupperware containers of leftovers and Ryan and I ate ravenously. It wasn't the same as fresh out of the oven turkey, but after a couple of days of hospital food it tasted great.</p><p>Though I desperately wished to be discharged from the hospital before everyone left, I ended up staying through the weekend. MRSAs are nasty and they wanted to closely monitor the Vancomycin (antibiotic) that slowly dripped into my IV. I was devastated to learn they had scheduled a dialysis treatment for me Sunday afternoon. The dwindling hours remaining to spend with my family, most of whom were departing that day, had been completely erased.</p><p>I was wheeled down to Chandler Regional's cramped dialysis unit and thought <i>maybe</i> there was a chance I would be finished before Doug and Kristen had to leave for the airport. The crushing helpless feeling when I did the math and realized that wouldn't happen overwhelmed me. They made a brief appearance in the dialysis room to say goodbye, but it was still achingly sad.</p><p>Monday I was sprung from the hospital, one day after most everyone had departed (my mom hung around for a couple of extra days). As is the theme of this entry, Ryan and I would be missing Christmas. It would be the first time for either of us to not spend the holiday with a set of parents, but we would make the best of it at home in Arizona. Upon my release I was treated to the spectacle of Ryan and my mother attempting to assemble an artificial Christmas tree that had incorrectly labeled parts. I watched silently as their moods rapidly shifted from amusement to irritation as they struggled and argued about the correct configuration. I think it was the only time I ever heard them snip at each other.</p><p>Our one sliver of comfort was that Jason would be coming for Christmas. I'm not gonna lie - though we missed the "family Christmas" that year, it was fun in its own unique way. We were free to explore activities that were not etched in tradition. This included getting lost out in the desert looking for Christmas lights, marvelling at the 30 foot tall Christmas tree made up entirely of tumbleweeds in downtown Chandler, and just hanging around the house with Mel, Jeff the Cat, and Puppy Lucy. It was also ground zero for the <a href="https://www.melbotis.com/2005_12_25_melbotis_archive.html#113557153398301720">Jones Soda Holiday Taste Test Incident</a>.</p><p>Then, after Christmas, something remarkable happened. Life became....amazingly <i>normal.</i></p><p>Aside from dialysis three days a week, I had virtually no appointments. I saw Dr. Lamba at the dialysis clinic. Lab work was drawn during treatment. My migraines were responding to my prescription medication and I was no longer shuffling off to the ER every third day.</p><p>Making life easier this go-around on dialysis was not having to worry about work. Also, in the years since I'd had my transplant, the technology and methodology of dialysis had changed. They were taking a more personalized approach to each patient's treatment and not running everyone at a flat four hour rate. Not only do different people have different amounts of blood to clean, they also take care of themselves with varying amounts of discipline, thus requiring different amounts of filtration.</p><p>My first day of treatment I was informed I would be <i>starting</i> at three and a half hours with the possibility of further time reduction in the future with good behavior. </p><p>Those two things made all the difference. Mentally it was easier knowing that I wouldn't be on the machine as long and when I did finish I could just go home and rest instead of having to rush off to work. Also, because I was getting more rest at home I was generally just in better physical health. </p><p>One aspect of returning to dialysis I wasn't so jazzed about was the fact that at this clinic, they frowned upon lidocaine. In fact, my first day there my tech informed me that lidocaine was terrible for the longevity of your fistula. If I wanted to have a lasting relationship with my fistula I would need to forgo the lidocaine. </p><p><i>"Well that sucks</i>," I thought. I reluctantly agreed to go without and just take the needles without anesthetic. Did it hurt like hell? Yyyyep, it sure did.</p><p>By the time we had completed four years in Arizona we had had enough. Ryan had been searching for jobs back in Austin for months and had recently started casting a wider net to other cities just to get us back to Texas, but it turns out companies really hate having to pay to relocate their employees. In the summer of 2006 we finally broke and said, "let's just go."</p><p>Was it risky? Yes. But we were afraid if we did not take this chance we would lose our opportunity. The writing was on the wall in regards to the crumbling housing market and if we wanted to make any money on our house in Phoenix we would need to act fast. </p><p>Our decision was made. We put our Chandler home on the market and began our search for a new residence back in the heart of Texas. Come hell or high water, we were going home.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-l_1JWnACwUlAyct1Lcs89U8e4xba3aogj6xwClAhbiVcdeZd1R_jIKj7e6LFpsYRBgwwI14pj-IGRx6DfKsIWQSwgsMkXKiu3LLLbqb1e7rlZrIopJtRB1abtaDhCJm7BIs3FPo_0nV0SN4SbKlKOoIoZS249ex-kcwihIeLoHy3mqhsdX4fUrgt/s320/tastetest.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="320" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-l_1JWnACwUlAyct1Lcs89U8e4xba3aogj6xwClAhbiVcdeZd1R_jIKj7e6LFpsYRBgwwI14pj-IGRx6DfKsIWQSwgsMkXKiu3LLLbqb1e7rlZrIopJtRB1abtaDhCJm7BIs3FPo_0nV0SN4SbKlKOoIoZS249ex-kcwihIeLoHy3mqhsdX4fUrgt/s1600/tastetest.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><i>Jeff the Cat and the Jones Soda Taste Test</i></div><br /><p><br /></p><p><i><a href="https://mcsteans.blogspot.com/2023/01/transplant-three.html">Next up: Transplant Three?</a></i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-20472600228757170712022-08-04T10:26:00.000-05:002022-08-04T10:26:15.655-05:00Cabin Fever<p>This is all going to sound like I'm breaking out the tiny violin and begging for sympathy. I hope it doesn't come across that way. Everything is fine. We're healthy, the dog is okay, we have each other and I am so thankful for that. Things could be a lot worse I am well aware. But sometimes you just have to vent and that's all that this is.</p><p>I'm so very tired of this. "This", meaning 800 varieties of covid, monkeypox, possibly polio again (I'm aware there are only a few cases in New York, but it starts somewhere, right?). In the beginning, in the wayback times of March 2020, this was supposed to be a temporary sacrifice. Those of us that were fortunate enough to be able to hole up in our homes were assigned to isolate for just a few months until things settled down. It lasted a year.<br /></p><p>The beginning of 2021 arrived with the promise of vaccines. We all scrambled in those first few months, waiting our turns for shots, struggling in a scavenger hunt for shots and appointment times. After my family and close friends were all vaccinated we started seeing each other again. My brother and sister-in-law, whom I had not seen in a year and a half, came for a visit in June. We met with Ryan's family inside of houses. Dinners with friends (still not in restaurants) started up again. Nature seemed like it was healing.</p><p>Covid was also healing. And mutating into different forms. At the end of the summer we went back into semi-lockdown. Things got better again in time for the holidays. Doug and Kristen came again for Christmas and we were able to celebrate with the whole family. </p><p>Then Omicron arrived. Lockdown again. Then it got better again. We celebrated birthdays with the family, ate outside at restaurants, and had a great weekend with Doug and Kristen when we all went out to Canyon Lake to a lake house to celebrate my dad's birthday in May.</p><p>On Memorial Day Ryan got covid. After avoiding it for over two years he got it without even leaving our house after we had two people over for dinner. Luckily the day he started feeling bad he got on the phone with his doctor, got prescribed Paxlovid, and really only felt sick for the weekend and then rundown the week after that. I never tested positive.</p><p>I don't know how I managed to avoid it. Maybe it was my second booster, maybe just dumb luck. But I am mostly thankful that we weren't both sick at once and that I could take care of Ryan.</p><p>So now we're back in self-prescribed lockdown. At this point you might be rolling your eyes and saying, "Troubles, you are overreacting. Everyone else has gone back to life as usual. Just wear a mask if you're worried! You can't be scared to live."</p><p>It's not that easy for me. If you've ever read this blog you know that I have serious medical problems. You know by now that I have had two kidney transplants and have been on dialysis for a very long time. Because of that, I also have a weakened heart. Three years ago I had a S-ICD (subcutaneous implantable cardioverter-defibrillator) placed under my left arm.</p><p>I pride myself on staying as healthy as possible. Partly because I don't enjoy feeling like crap and partly because I know what an uphill battle it is to get back into shape. I'm pretty careful about what I eat, watch my fluid intake, and exercise regularly. Because I don't have a full functioning heart or kidneys, I don't have the same amount of energy as most people. If I don't exercise for a couple of days, not only can I feel it, I can see the impact through my elevated blood pressure readings at dialysis.</p><p>So it's not just "getting sick" for me. Getting covid could have a serious impact on my heart, and that could have long term implications I could possibly never bounce back from. </p><p>Where does that leave us? Stuck at home. Again. At this point I'm past being able to say, "this will all be over in two months/a year/ two years." I can only hope that there will be another lull in contagion so that I can see my friends and family again. But even then we will be pushed back into isolation when the next wave comes.</p><p>This summer has seemed particularly brutal because of the oppressive heat. We are having record-breaking temperatures that remind me of living in Phoenix. It's been in the 100s since May, nearly every day cresting the century mark. This means every day at 7am we are out walking the dog in the brief window where we won't clonk over from heat exhaustion. I spend the rest of my time at dialysis, trying to keep the house clean, Andre happy, and juggling various doctor's appointments. Ryan is stuck going into the office one day a week (where he sits in his office by himself) and being shut in his home office. Occasionally he will do a podcast and get to speak to someone who is not me, Andre, or a work colleague.</p><p>I am thankful for so many things. We have a roof over our heads. I have access to good healthcare. The electrical grid is (knock on 10 tons of wood) so far holding out. I am thankful for our wonderful neighbors who let us use their swimming pool to escape the heat. I am thankful for this goofy dog who entered our lives seven months ago. He has settled in nicely and seems to think of us as his family now. Most of all, I am thankful for Ryan. He is keeping me sane, making this all do-able, giving me happiness.</p><p>But I'm still so very, very, tired of this.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkiB5cH8an_wwdg2Maec0nSveTm720o7zVEucNmEFmzo4WF_mqQ9a2gFH61X4y_oCqIWKGq7_EvRlGEkck0PhsntTpScwppqBPrtE8N5MYGP2N5pwbbtMklCq2rxwLUcLKD01l9ns8L9KyyRFgcgzeUWTkEHskB3Plx_t9LVmO5-9G66_h9kzwxgtO/s4032/PXL_20220804_151323660.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkiB5cH8an_wwdg2Maec0nSveTm720o7zVEucNmEFmzo4WF_mqQ9a2gFH61X4y_oCqIWKGq7_EvRlGEkck0PhsntTpScwppqBPrtE8N5MYGP2N5pwbbtMklCq2rxwLUcLKD01l9ns8L9KyyRFgcgzeUWTkEHskB3Plx_t9LVmO5-9G66_h9kzwxgtO/s320/PXL_20220804_151323660.jpg" width="320" /></a></div><div style="text-align: center;"><i>Andre is us all</i></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br /><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-80927261248325814802022-05-03T11:25:00.005-05:002022-09-08T10:41:23.046-05:00Some additional thoughts on "Migraines"<p><i>Previously on <a href="https://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">The Diagnosis</a></i></p><p><br /></p><p>Shortly after posting my last entry entitled <i>Migraines</i>, Ryan, as he kindly does with all of my writing, re-posted it on Facebook. It was accompanied by a comment that I had "pulled my punches" by basically sugar-coating the entire experience. I value Ryan's opinion above all others, especially since, well, he was there. He usually has only minor feedback - mostly positive and encouraging, occasionally sharing bits and pieces of items he remembered that I did not include. This time his observation worried me so I went back and re-read what I had written.</p><p>He's absolutely right.</p><p>I have a tendency to do two things. The first is, as Ryan said, I will often re-frame my story when talking to other people so that it's not so upsetting. I don't like for people to dwell on what I've been through. It's in the past, I got through it, and it's not something I even think about much anymore. And I also don't like making other people feel bad.</p><p>The other is that I've just blocked certain things in my memory. I think it's my brain's way of protecting me and being able to continue to have a good attitude. If I can fool myself into believing "that wasn't so bad" I can maintain a more cheery disposition and it's easier to continue on.</p><p>Also on top of this and in this particular case, the migraine era was a time in which one, I felt crappy a lot, and two, I was on a lot of drugs (prescription, people). I just don't remember it well <i>at all </i>and that's on top of my brain's selective memory. But you know who does remember it? Ryan. </p><p>It's no secret the Phoenix years were awful and high on the list of reasons for that was our isolation. Ryan not only had a front row seat to the unpleasantness, he felt entirely responsible for me. There was no one else around to give Ryan assistance. Not only would it have been nice to have help making decisions, being my advocate, and lugging me to and from the hospital, he also needed the support emotionally.</p><p>In Texas it was a lot easier for my mom to jet in to lend a hand when things got hard. Jason lived nearby and we had a lot of friends. Ryan's folks were relatively close. My mom would occasionally fly over to Arizona, but it was a bigger ordeal and happened much less frequently. </p><p>Most devastating of all was the resistance he was getting from me. I hated being admitted to the hospital. <i>Hated </i>it. So when the doctors gave me the all clear to leave the ER instead of being checked in, I should have backed Ryan up and pressed harder for more answers, but instead I couldn't wait to get home and jumped at the opportunity. </p><p>I also wasn't taking care of myself at home. Here's an example: my appetite wasn't good so my diet was terrible. We would have whole fights over my insistence upon eating ramen noodles. Ryan's point, which was a solid one, was that the MSG was not helping my migraines. In my head, I was getting migraines all the time anyway, so what was the difference? Not a great argument and not helpful.</p><p>Friends, throughout this whole story I've given the impression that I was a model patient. That may have been true in some respects, but it certainly wasn't the case at home. It's one of my biggest regrets in life that Ryan had to go through that stress and that I was not more understanding and helpful. He still carries a great deal of PTSD from that time. In giving a rose-colored version of events, I was not only being dishonest with you the reader, I was also discrediting Ryan's experience. </p><p>I plan on going back and editing the entirety of The Diagnosis when I finish (I think we're getting close!), and I will merge this content with the Migraines chapter at that time. For now, I wanted to make sure it got the attention it deserves so I am making it a separate entry. My apologies to Ryan for not getting this right the first time. I never want him to think that I don't appreciate and treasure the kind of person that he is. He truly got me through life with migraines.</p><p><br /></p><p><i>Next up: <a href="https://mcsteans.blogspot.com/2022/09/dialysis-two.html">Dialysis Two</a></i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com2tag:blogger.com,1999:blog-8450918409991661424.post-61863117046749036082022-04-26T21:47:00.004-05:002022-09-08T10:38:33.861-05:00Migraines<p><i>Previously on <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">The Diagnosis</a></i></p><p><br /></p><p>I'll be blunt. My migraine troubles made life hell for us while living in Phoenix. </p><p>I saw a total of three different neurologists in the Valley of the Sun. Doctor #1, selected on a recommendation from Dr. Lambda, was in the same building as my kidney doctors. After he auditioned a couple of completely unsuccessful preventative medications and found no solution to my progressively debilitating migraines, he was dismissed. </p><p>Doctor #2 was located in downtown Phoenix, an inconvenient 45 minutes without traffic from our house. A different set of preventative medications were rolled out and, like the others, did not work and had unpleasant side-effects. Doctor Two lasted less than a year.</p><p>Doctor #3 was in the Ahwatukee Foothills, located across I-10 from our suburb. I settled there because it was close, the doctor was nice, and she wasn't trying to start me on endless preventatives that were derivative of the same prescriptions I'd already been trying.</p><p>I had all of the usual tests - MRIs, CT scans, just to be <i>really</i> certain for the thousandth time that there wasn't some other underlying condition causing the headaches. There wasn't. They were just migraines.</p><p>What was happening that my migraines were getting worse? Basically my sumatriptans (my at-home migraine medication) were gradually becoming more and more ineffective. If a migraine was not stopped in its tracks, every single time it would progress to the point where I was vomiting and that equals bad news for a transplant patient. If you have hit that point, you go to the ER where they give you anti-nausea meds and narcotics.</p><p>Friends, I went to the ER in Arizona an indecent number of times. At first it was just occasionally. We were driving all the way over to Desert Samaritan Hospital in Mesa, where I had my pheresis treatments, simply because that was the home base for my kidney doctors and I didn't know any other hospitals. One year Ryan and I spent an absolutely horrible New Year's there. If you were to guess that New Year's Eve is not the best night to be at the ER, you'd be correct. They were short staffed and the workers who were there did not want to be there. We sat in that waiting room for hours.</p><p>Finally shortly after midnight I was called back. They gave me Demerol. </p><p>If you're not familiar, Demerol is a serious narcotic you don't want to mess around with. Use of Demerol has declined in recent years for many reasons not least of which is the danger of toxicity. In retrospect, they probably shouldn't have used it on me at all considering it is processed by the kidneys.</p><p>I was out of my mind. So out of my mind that when they asked me if the pain was gone I didn't know how to answer the question. How should I know? Why don't you ask the floating frog wizard sitting next to me?</p><p>They let me go home. Four hours later the fog was starting to lift and I realized my headache was not gone. We went back to the hospital the next morning. Morphine was administered this time and the migraine stopped. We had spent nearly 24 hours in and out of the ER.</p><p>The wait times were no joke. Phoenix was experiencing serious growing pains and the hospitals could not keep up. At some point we realized there was a much closer hospital that my doctors would visit. Chandler Regional was only a ten minute drive from home, much easier than the almost half hour it took to get to Mesa. The wait times, while also horrible, were still better than those at Desert Sam. I once overheard a woman in the waiting room say she had been sent over to Chandler because Samaritan was too full. Still, our record at Chandler was eight hours to be seen. Eight. Hours.</p><p>The Chandler Regional Emergency Room was just bizarre. No matter what time of day, the volume of the tv in the waiting room was set to 180 decibels, which believe me is just <i>the</i> perfect remedy for nursing a migraine. If you already feel as if you're going to throw up, reruns of Everybody Loves Raymond at that level <i>will</i> push you that extra mile. </p><p>Sometimes huge groups of people would arrive together, including small children. I could understand this if someone were gravely ill, but often it was a struggle to decode which member of the giant party was actually sick without looking for the identifying medical bracelet. These families would show up with bags of McDonald's like they were having a family reunion at midnight in the ER.</p><p>The times when it was especially crowded were maddening, because some of the easy cases got "fast tracked". Those whose ailments could be easily treated by a nurse or nurse practitioner instead of a doctor were whisked back within minutes of arriving. Once, while throwing up into the complimentary extra large popcorn bucket, I watched a child walk immediately back into the treatment area who literally had a Lite Brite light stuck up his nose. I made a memo to myself: next time bring a Lite Brite light.</p><p>Ryan spent a lot of time checking in with the front desk to get updates on where we were on the list, though the triage nurses were rarely persuaded to move us up in line. They'd seen everything and it was impossible to shock them. You could show up with a barracuda attached to your forearm and they would blandly ask, "how long have you been having this problem?" A migraine, while miserable, was not actually life threatening.</p><p>The treatment area was no less strange. Approximately one half of the patients were seeking assistance for kidney stones (dehydration is unsurprisingly a huge problem in the desert). Once we were positioned in a room next door to a woman with constipation so painful they were going to attempt to manually remove the blockage. Another time we overheard, "you'd be surprised how many folks come in with bugs in their ears."</p><p>The ER visits started eating into my sick days at work. I had to work out some FMLA forms with my employer so that I wouldn't be fired if I went over my allotment of sick days.</p><p>Ryan missed work as well, because I couldn't drive myself home. Every time I went in I was getting some combo of morphine and anti-nausea meds. Morphine on its own is good stuff, but add in Phenergan and you will be <i>flying</i>. Don't morphine and drive, kids. </p><p>After I quit my job and was home full time I had fully planned on looking for another job and was even working on my resume, but the migraines had other ideas. By summer of 2005 I was making two or three trips to the ER per week. I would still at least <i>try</i> to use my prescribed triptains, but if they hadn't kicked in within an hour or two I headed to the ER. If I was lucky, I could be seen and given meds before the vomiting began, but that usually wasn't the case. </p><p>It was extremely frustrating that the ER docs, well aware of my frequent flier status at the hospital, continued to just treat the symptoms. No one ever had any long term solutions other than "come get morphine." I didn't know what the answer was either, but it very much felt like they couldn't push us out the door fast enough once the headache was gone.</p><p>These migraines would pop up at the most inconvenient times. Once we were at the movie theater to see A History of Violence. We didn't even make it through the coming attractions before I knew we needed to head straight to Chandler Regional. Another time we were attending a Gilbert Community Theater production of "Oklahoma!" If you are unfamiliar, the first act includes several very loud gunshots. At intermission I sadly informed Ryan that we needed to go, so we shuffled off to the ER in our fancy clothes. That was probably the most pleasant of our visits, seeing as it was unusually empty for a Saturday night. We got ushered to the back quickly and were attended to by a nurse who knew us pretty well by then. I was probably in and out of there in under two hours.</p><p>Ryan and I were asked many times while we lived in Arizona why we didn't travel around the state. It was the home of Sedona! Flagstaff! The Grand Canyon! We were missing so many opportunities! I hope this post has shed some light on the answer to that question. It just wasn't safe to be too far away from a hospital or my doctors when this was going on. And frankly, we just didn't have the mental or physical energy to plan anything. It was all just too depressing.</p><p>Doctor Mom was keeping tabs on the happenings in Phoenix and was constantly on the lookout for new breakthroughs in headache research. One morning she saw a doctor from the Cleveland Clinic on Good Morning America discussing a promising new migraine therapy in the form of Botox injections. </p><p>Well that sounded interesting. I was willing to try anything at this point. </p><p>Not one to hesitate, Mom had us scheduled for a trip to Cleveland soon after that and in September we flew up to Ohio to meet with Botox Guy. Doctor Botox was pleasant enough. We went over my lengthy medical history, but we all knew I was there for The Botox and thus at the end of the meeting he injected me several times over both of my eyebrows.</p><p>For whatever reason, I didn't have a single migraine while I was in Cleveland, so to no one's surprise my body had to compensate in other ways. Not knowing if Doctor Botox would want to schedule any extra tests, we had planned to be on the ground in Ohio for three days. By the end of the first day I had developed a fever. Because of course.</p><p>I felt so bad the following morning we located a nearby hospital. Seeing as I was a transplant patient, it was pretty clearly another infection. I was given a prescription for antibiotics and we retreated to the hotel. I spent much of the rest of that day and the next sleeping, but felt well enough to go out to dinner on the final night. And that was my one trip to Ohio.</p><p>It didn't take long after my return home to realize the Botox was doing jack squat helping with the migraines. In fact, the only noticeable change was not being able to move the upper part of my face. I'm not judging anyone who gets it - I had jaw surgery for heck's sake. But it must take a special skill to be able to express yourself with Botox.</p><p>My neurologist finally gave up and suggested the drastic measure of going on a very small daily oral dosage of morphine. Not enough to mess with my head, but hopefully enough to ward off any headaches. My migraines got much better soon afterward, but not because of the morphine.</p><p>A monumental change in my life happened around the same time that later would reveal itself to be the true source of relief. I had to go back on dialysis. I didn't put the pieces together at first, thinking that just the change in lifestyle and introduction of daily morphine composed the finish line for my marathon of ER trips. But I started thinking about the similarities between the ends of my first and second transplants and how bad my migraines were both times. My theory was that because my filtration system was damaged and my body was getting rid of <i>everything </i>that also meant my sumatriptan medication was going right through me. When I restarted dialysis, my medication started working again.</p><p>My migraines were finally under control, but dialysis had returned.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhHEbd-rnjZ4qX263G2VhUJO4IvN_TuDJ5QKYq8vm9lCvWOXUWgR06NXsXAuUh5ilE7AxVzw6p0nED-ZigNGswk382wcQC0HGPPjiGtECeFr4ORULgE2Ky2KZBBaRVB08qxgPXiFWXNf4h-Qyh-icsF7a0xlxDjYztJtKa6DUbhwnh50mczWz1X-Apj" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/a/AVvXsEhHEbd-rnjZ4qX263G2VhUJO4IvN_TuDJ5QKYq8vm9lCvWOXUWgR06NXsXAuUh5ilE7AxVzw6p0nED-ZigNGswk382wcQC0HGPPjiGtECeFr4ORULgE2Ky2KZBBaRVB08qxgPXiFWXNf4h-Qyh-icsF7a0xlxDjYztJtKa6DUbhwnh50mczWz1X-Apj" width="320" /></a></div><div style="text-align: center;"><i>Not included in Phoenix stay</i></div><p><br /></p><p><br /></p><p><i>Next up: <a href="https://mcsteans.blogspot.com/2022/05/some-additional-thoughts-on-migraines.html">Some Additional Thoughts on Migraines</a></i></p><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-6480876189956059742022-03-18T17:08:00.006-05:002022-04-26T21:48:24.277-05:00Phoenix Pheresis Phunzone<p><i>Previously on <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">The Diagnosis</a></i></p><p><br /></p><p>We spent four years in Phoenix and much of it is difficult for me to remember. There are moments that stand out, episodes like the Sed Rate business and a few hospitalizations that will stick with me forever. The middle part of our residence has congealed into a blur of plasmapheresis and migraines and ER trips and hospital stays that are now hard to peel apart.</p><p>The pheresis and migraines had somewhat of a symbiotic relationship. It got to a point where every time I had a treatment I could count on having a migraine that night. Or the migraine would present itself in the middle of pheresis in the form of nausea and make the experience more unpleasant. I've decided to split this section into two parts, because there's just too much for one post. I will jump back and forth a bit on the timeline, so I'll be discussing my three years on pheresis here and then my ordeal with the migraines in the next chapter. Hopefully that will make the story easier to digest.</p><p>My plasmapheresis treatments in Phoenix very nearly ended before they began. Back when I first moved to town and was living by myself in the furnished apartment, I received a bill from Seton Hospital in Austin for all of the pheresis treatments I'd had there in the past year. </p><p>If I haven't mentioned it yet, pheresis is not cheap. It's about the same cost as dialysis, which back then was around $2,500 - $3,000 per session. With all of the visits to Seton I'd made since my transplant for therapeutic plasma exchange plus associated hospital stays and procedures, I'd accrued a bill of up over six figures.</p><p>I nearly hyperventilated. We didn't have that kind of money. Who does? Plus I was about to start treatment in Phoenix. What were we going to do?</p><p>I called Ryan and proceeded to freak <i>him</i> out. He immediately switched into problem solving mode. If we even paid part of this bill we could possibly go bankrupt. We tossed around ideas, even one as extreme as getting a divorce so that one person could file bankruptcy leaving the other still able to draw an income. Not the ideal situation, but it would enable us to keep living as a family without completely going under.</p><p>Next, because I was a mature and capable 27-year-old, I called my mother. She somewhat talked me down from the cliff and said she and my dad would help us out with this financially. Having my parents bail us out was not a scenario I felt great about because it was a <i>lot</i> of money, but it was a better solution than getting divorced and going bankrupt. I can't stress enough how fortunate I was to have that kind of support system.</p><p>The next morning I got on the phone with Seton's billing department and resolved the situation within five minutes.</p><p>The lesson of the day was: do not take bills at face value until you do more detective work. First, make sure your insurance company has been properly billed. Often the billing department will just go ahead and send you a bill if your health insurance is dragging their feet. When you have two insurance companies, always double check with the provider that <i>both </i>parties have been billed. That was the situation here, especially since I had Medicare.</p><p>As previously mentioned, Medicare is absolutely essential when you have ESRD (end stage renal disease), but the guidelines are a little convoluted. When you get a transplant or go on dialysis, Medicare becomes your secondary insurance for the first 30 months. At the end of that period, it switches to your primary carrier. If you get another transplant, that starts all over again. It's all unnecessarily complicated.</p><p>It turned out Seton hadn't yet heard back from Medicare, which after my second transplant had once again become my secondary insurance. The first time I was on pheresis, I was far enough along in my transplant that Medicare was already my primary. Medicare does a substantial job of reducing costs and taking care of the majority of your coverage. This is great for ESRD patients, but it also comes with them taking their sweet-ass time to pay people. It took even longer this go-around because they were waiting on BCBS to be billed first. So, crisis averted, but for a brief moment we had a huge scare.</p><p>Funding secured, I settled on a once-a-week schedule for pheresis. This plan was more of a guideline than a rule. Because it was a treatment we thought <i>might </i>help in the long run rather than a thing absolutely keeping me alive like dialysis, it was easier to skip weeks when it wasn't convenient. For instance when I was dealing with my sed rate crap and was borderline nauseous all of the time I took a break. If I needed to leave town for vacation I could do that as well.</p><p>But I was still getting pheresis more regularly now, and while it was possibly extending the life of my kidney, it also took a toll. At the end of each treatment you aren't able to get all of your blood back, and with my kidney having a hard time replenishing blood cells it was essential to check my blood count before each treatment. If I was too anemic we had to postpone. If my hematocrit was dangerously low I would need to stick around that day and have a blood transfusion instead of pheresis.</p><p>I was put back on Epogen injections, but even with those it was a struggle to keep my hematocrit up. This is the part where I kindly suggest that if you <i>can</i> donate blood regularly, please do! Blood is used for a wide variety of reasons, and not just for emergencies, trauma, and surgeries. </p><div><p>In the spring of 2005 I was mulling over the decision to leave my job. It was an ideal position on paper, good money and benefits, great hours and nice co-workers, but I was kind of miserable. And I realized a big part of that was...I just wasn't good at it. I enjoyed programming when I worked at Human Code because the content was fun. Making computer games for kids was a blast. And I got away with what was probably less than stellar code because no one ever checked my work. </p><p>At Garmin we would do peer reviews before we submitted our code. Which is a good thing! It makes for stronger programming if you have two minds collaborating. But it also exposed my weaknesses. I was falling behind my co-workers and couldn't keep up with the changes in technology and techniques. Because I came into programming late in life, I didn't learn to code until college. It wasn't second nature to me like my peers. Not that there aren't folks who don't take to software engineering as adults, but I didn't happen to be one of those people. </p><p>Before I officially left Garmin, I was doing some inquiry into whether or not Ryan's insurance would pay for my pheresis treatments. I wanted that guarantee so we wouldn't have another scare like we did with the Seton bill. That all changed the day I had my third yearly performance review. </p><p>I shouldn't have been blindsided by it. I knew I was struggling, not keeping up, not putting in good work. But my boss had also never talked to me about it. There's such a thing as being TOO nice, especially as a manager. It basically confirmed my worst fears about my position - that I wasn't good at my job and everyone knew it. He phrased it more politely, but it was still rough. I actually cried in that meeting. With my boss. I could tell he felt terrible, and I felt bad for making him feel bad. He let me go early that day.</p><p>The following Monday I put in my two weeks. My fellow employees had always seemed to enjoy my company and were sad to see me go, but I think they all understood the reason for my departure.</p><p>I finally heard back from Ryan's insurance about the pheresis <i>after </i>I had quit my job. Their answer was a firm "that's an experimental treatment and we won't cover it". </p><p>Well, shit. I called Dr. Lambda's office, explained the situation and notified them that if I couldn't get coverage I would have to halt pheresis.</p><p>Of all people, the aforementioned Dr. Smith* of "being a jerkface" fame, helped me out. To be fair, I had seen Dr. Smith a number of times during hospital rounds since our first meeting and he was much nicer to me after that first visit. He probably was just having a bad day during that introductory meeting, but that gruff superiority was still in there somewhere and boy did he put it to good use in his letter to the insurance company. Humana got the same response I did when I referred to the the treatment as "experimental". They agreed to pay for it.</p><p>It was kind of nice to take a break from work. I got to spend time at home with Melbotis, Jeff the Cat, and new puppy Lucy, who was in desperate need of guidance. What I didn't anticipate at the time was that hiatus becoming a lifestyle by stretching to 17 years and counting. After I left Garmin I had every intention of seeking out other employment, but my migraines had other ideas. They would soon consume my life and Ryan's like nothing had before. </p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhkIQK9sYVBNQ87DqiK2Rbr6JpMuxOKFj3wfXYhKy02E_yjBMZ5MbCjknLtCVXYT1e5ciTNe4V_WsNlxag_hz8rdpj2xqP939zS8oNPWZuQKCCBUdmRnFAV52c7ZRpdxX53QaAgydLDEs7AHZHF4Cg2W_gsuZMNaeA03gLxwjwj0JUd4tG8_RUlSJZj=s320" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEhkIQK9sYVBNQ87DqiK2Rbr6JpMuxOKFj3wfXYhKy02E_yjBMZ5MbCjknLtCVXYT1e5ciTNe4V_WsNlxag_hz8rdpj2xqP939zS8oNPWZuQKCCBUdmRnFAV52c7ZRpdxX53QaAgydLDEs7AHZHF4Cg2W_gsuZMNaeA03gLxwjwj0JUd4tG8_RUlSJZj" width="240" /></a></div><div style="text-align: center;"><i>pheresis is phun for everyone</i></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p>*again, not his actual name</p><p><br /></p><p><i>next up: <a href="http://mcsteans.blogspot.com/2022/04/migraines.html">Migraines</a></i></p></div>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-77973331258814717512022-02-03T10:35:00.004-06:002022-03-18T17:10:27.465-05:00What the Hell Is a Sed Rate?<div><i>Previously on <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">The Diagnosis</a></i></div><div><br /></div><div><br /></div>We settled into our life in Phoenix. I was still doing weekly plasmapheresis treatments and had made inaugural visits to each of my other new doctors. Blood work was drawn about once a month at a lab that was on my way to work. Because appointments were not accepted, people would line up outside the building well before seven o'clock. Then there was a mad rush when the doors were unlocked to get your name on the list so you wouldn't be there all morning. It was chaotic and kind of stressful.<div><div><br /></div><div>Ryan quickly found employment at ASU via a recommendation from a former co-worker at UT. He was working in the college of engineering, building and managing their distance learning program. Like mine, his office was in Tempe, though he had a much longer commute. It would take him 45 minutes on average to drive to and from work.<div><br /></div><div>We had made friends. Two of them! A guy who was also named Ryan about our age started at my office about 2 weeks after I did and we got along immediately. He and his wife Trisha lived about 10 minutes from our house in Chandler. Two friends is not a lot, however, and we missed socializing.</div><div><br /></div><div>Our hunger for entertaining led us down the path of concocting the brilliant plan to have BOTH families come to us for Thanksgiving that year. Seemed like a good plan. We had a house now. The families had met on multiple occasions and everyone got along.</div><div><br /></div><div>I was practically vibrating with excitement leading up to Turkey Day as we missed our families and were starved for social interaction. Because our house was small, only the brothers stayed with us. Jason claimed the guest room and we set Doug up in the office with an air mattress and the company of Ryan's action figures. The Steans and McBride parents plus Ryan's cousin Susan set up camp at a nearby hotel.</div><div><br /></div><div>I'm setting this up as if the whole experiment was a disaster. It wasn't. Everyone was agreeable and a good time was had by all. Ryan's great aunt, who lived in Mesa, joined us for turkey dinner. The thing is, even if everyone is playing nice you're still dealing with two separate families who have their own idea of how Thanksgiving is done. There were two moms used to doing all of the cooking trying to negotiate space and responsibilities and one clueless hostess attempting to conduct the whole operation. There was the need to entertain a large group of people with different interests in a city we didn't know all that well for four days. There was venturing out to dinner that weekend with no back up plan when every restaurant had a two hour waiting list. </div><div><br /></div><div>I had set myself up for trouble by getting so amped up so early for the occasion. I had been planning out details for months. Thanksgiving in actuality, while enjoyable, was incredibly stressful.</div><div><br /></div><div>By Saturday I felt completely drained. The clan split with the women going shopping and the men off to the airplane museum. Doug stayed at home with me and we spent a relaxing afternoon chatting and hanging out with Melbotis and Jeff the Cat. </div><div><br /></div><div>Saturday night I woke up in the middle of the night with pain the back of my neck and left shoulder. So severe was the discomfort it was difficult to get back to sleep. By the following evening the pain had gotten so bad I couldn't turn my head or find a comfortable sleeping position, a migraine had formed, and I started throwing up. We headed to Desert Samaritan Hospital around midnight. </div><div><br /></div><div>Tests were run. Drugs were administered to alleviate the pain. First assumptions were that it was a pinched nerve, but I was having trouble isolating the source of the discomfort. It almost felt like it was moving around. Also I was having such a strong reaction that the doctors wanted to make sure it wasn't something more sinister. </div><div><br /></div><div>After a day they kind of shrugged, sent me home with painkillers and muscle relaxers and told me to make an appointment with my regular doctor. I placed a visit to Dr. Chang that week. He seemed puzzled and suggested I see my neurologist.</div><div><br /></div><div>I saw three different neurologists during the course of our residence in the Valley of the Sun. We'll call this one Neuro #1, mainly because I can't remember his name. He sent me for a more in depth MRI during which I was instructed to not move any muscle even to swallow. You try doing that for forty-five minutes. That test still came back with nothing. There didn't appear to be anything medically wrong with me except that I was in extreme pain.</div><div><br /></div><div>This continued for a few weeks. I tried to limit my painkillers and muscle relaxers to overnight so I wouldn't get addicted and would be able to function during the day, but the residual effects still muddled my mind at work. Sitting at my computer all day was miserable. It hurt to type, so I tried to do most of it with one hand.</div><div><br /></div><div>I'm sure at this point my boss and co-workers were rolling their eyes at me. Everyone in that office was incredibly nice, but I was flat out coming across as a hypochondriac here. The kidney stuff they understood, even having to leave once a week in the afternoon for an experimental plasmapheresis treatment, but this was some nebulous neck/shoulder pain that I had difficulty explaining.</div><div><br /></div><div>As with Thanksgiving, Ryan and I were similarly overly ambitious about Christmas that year. We feared one or both families would feel slighted if we did not come home, even though we had all been together for Thanksgiving. Thus materialized the plan to take a week off of work, fly to Oklahoma first and <i>then </i>Houston after that.</div><div><br /></div><div>It became clear that I was not in any shape to be traveling anywhere. The trips were cancelled. It was not the first nor the last time I would ruin Christmas, but I still felt horrible for everyone involved. Mom and Dad quickly got reservations to fly to us and poor Doug got left out in the cold.</div><div><br /></div><div>The week leading up to Christmas Day I finally started feeling better. Range of motion on my neck was returning and the pain was ebbing. I was ecstatic. Just in time for Christmas! I picked Mom and Dad up from the airport the day before Christmas Eve after work and shared my good news. The four of us went out to dinner that night. Midway through dining I started feeling the same pain and tightness starting to form on the <i>other</i> shoulder. The right one.</div><div><br /></div><div>Shit.</div><div><br /></div><div>The cycle started all over again. Was this ever going to end? What the hell was going on? This was obviously not some sort of injury or pinched nerve if it just <i>up and switched sides </i>on me.</div><div><br /></div><div>After my parents departed I went back to Dr. Chang. Even though this didn't appear to be an injury he was running out of options and sent me to physical therapy. Great, another appointment that required me to leave work early. My co-workers must have been thrilled.</div><div><br /></div><div>I did PT twice a week for four weeks. They put little electrodes on the back of my neck for about ten minutes (that actually felt really good), then I would get a neck massage (also a plus), then I went to the exercise room for stretches and strengthening. That was less fun on account of me not being able to turn my neck without screaming.</div><div><br /></div><div>I couldn't tell if the therapy was actually doing anything. Much like getting a massage, it mostly felt good while I was there, then went back to hurting after I had left. I was really depressed. Even if this got better like the last time, would the problem just reappear in another part of my body? Or keep switching sides of my shoulders? It was even prohibiting me from doing normal everyday activities.</div><div><br /></div><div>Just like the last time, the discomfort did eventually subside. After it was gone I waited. And waited. Nothing happened. The bizarre ailment I had been suffering for over two months had just....disappeared. I eventually let it drift away from my list of concerns, and I was able to return to a semi-normal life.</div><div><br /></div><div>Two years passed. I was back having a regular appointment with Dr. Chang when he out of nowhere said, "Oh, by the way, I think I know what was causing your neck pain."</div><div><br /></div><div>Wait. What?</div><div><br /></div><div>"I didn't think of it at the time because it usually presents in patients quite a bit older than you, but you most likely had a high sed rate."</div><div><br /></div><div>'What the hell is a sed rate' you say? I'm so glad you asked. A sed rate, or sedimentation rate, measures how quickly red blood cells fall to the bottom of a test tube. If that number is high it can lead to inflammation in your body that can be quite painful. Conditions that can cause a high sed rate include the autoimmune family, cancers, infection, and wait for it..............chronic kidney disease.</div><div><br /></div><div>Well there you go. After two years I had my answer. At least now I knew I wasn't crazy. Major kudos to Dr. Chang for solving that mystery. If only we'd known sooner because the treatment involved a simple round of prednisone. We got to test the theory about six months later when I started to feel a little familiar twinge in my neck. I called Dr. Chang immediately.</div><div><br /></div><div>Blood was drawn and indeed, I had a high sed rate. I went on steroids for two weeks. The pain never got any worse and was completely gone within a week. </div><div><br /></div><div>This completely annoying and agonizing experience was just another of the many wondrous side effects of kidney disease. I thought I had seen it all by then, but nope. This was the weirdest of them all. Though it was short lived, I have never forgotten that run-in with debilitating pain. Every time I go to exercise or stretch I think about that time I thought I'd never get the chance to move like that again. </div><div><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEi87aARjUyM_PkOTbqZRkY_Gv2QJLNOII4lWBEr3n4w_3KsuHg6bTNIbBOaHMBY3Pn6j6KBPaklKUa8H3kDIe4y4u_-K6vA8t5dDhpJXoPHfTHEFv2kGyEvScU5IyiXyl_S9yjcdmdi1ycVFgcJQS68stJUA2I_EzrubOgesI4gJpp2K_ndmJI0Y2tN=s4032" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEi87aARjUyM_PkOTbqZRkY_Gv2QJLNOII4lWBEr3n4w_3KsuHg6bTNIbBOaHMBY3Pn6j6KBPaklKUa8H3kDIe4y4u_-K6vA8t5dDhpJXoPHfTHEFv2kGyEvScU5IyiXyl_S9yjcdmdi1ycVFgcJQS68stJUA2I_EzrubOgesI4gJpp2K_ndmJI0Y2tN=s320" width="320" /></a></div><div style="text-align: center;"><i>McSteans Clan in action</i></div><div><br /></div><div><br /></div><div><br /></div><div><i>Next up: <a href="http://mcsteans.blogspot.com/2022/03/phoenix-pheresis-phunzone.html">Phoenix Pheresis Phunzone</a></i></div><div><br /></div><div><br /></div><div><br /></div></div></div>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-1242181459516243092022-01-23T09:21:00.003-06:002022-02-03T10:37:43.311-06:00Phoenix<p><i><a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Previously on The Diagnosis</a></i></p><p><br /></p><p>Moving cross country to a new city is challenging in any situation. Making it even more difficult for me was also having to build a brand new network of trusted physicians.</p><p>First I needed to establish a home base for my treatment. For a kidney patient, this starts with a good nephrologist. I contacted my Austin transplant coordinator to see if she had any recommendations. After doing some research, she came back to me with a group based in Mesa. I made the call. </p><p>The nurse was extremely helpful as I attempted to sum up my medical history. She quickly grasped that it was lengthy and complicated.</p><p>"Oh, you're not an easy case are you. We'll need to put you with Dr. Smith.*"</p><p>A sound plan. I was indeed not an easy case, so I would love to be seen by their most knowledgeable physician. My appointment was set before I left Austin. It would be in early June, so that would give me time to settle in before the meeting.</p><p>My job started at the end of April. My mom accompanied me on my journey west in my trusty green Camry. It was an enjoyable two-day trip as we were expert travel companions and I always treasured being able to spend quality time with her. </p><p>Home for the next month would be a furnished apartment about 10 minutes from my Garmin office. It did not escape me how sheltered I'd been that at the not terribly young age of 27 I was for the first time completely on my own. There were a multitude of conflicting feelings swirling around me. Freedom, responsibility, loneliness, even fear. </p><p>I admit to being a bit of a chicken in that apartment at night. One evening I was startled by a man banging on the door. I handled this by muting the tv and pretending I wasn't home. My heart was racing. About a half hour later I heard a new knock. Through the peephole I spied a young woman in her early 20s. Not knowing what was happening I continued my possum defense.</p><p>"I know you're in there!" she yelled at me.</p><p>*possum*</p><p>"I can see your shadow under the door!"</p><p>*possum*</p><p>I really should have just opened the door, but at this point I had committed to my cowardice and honestly was too embarrassed at my behavior to turn back now. She left, but about 10 minutes later she slipped a note under the door. </p><p>The man who had been knocking earlier was a repo guy. Apparently the previous tenant had an outstanding debt and Repo Guy had been trying to contact him to collect his car. The woman had seen him before and he'd asked her about the resident. I decided to remain on my current path of doing nothing and thankfully never heard from the guy or the girl again. I'm just happy he didn't take my car.</p><p>Ryan and I purchased a modest home in Chandler, which is a suburb in the far southeast corner of Phoenix. It had a nice walled-in backyard for Melbotis and an open floor-plan, which was more of a curse than a blessing. The neighborhood was surrounded on two sides by cow pastures that the realtor claimed would be gone within six months. It took 3 years.</p><p>I couldn't move into the house yet as I had no furniture. At the end of May we flew Jeff the Cat over solo. That is a whole story of its own - one that traumatized both Jeff and Ryan. Jeffy spent the next week alone in an empty house, though I would go visit him after work every day.</p><p>Ryan arrived with Melbotis and his brother Jason who was along for the ride at the tail end of May. He had remained in Austin to finish up his job at UT and had to pack up the entire house by himself after I left. I was so happy when he and Mel showed up in Arizona. Jeff the Cat was also delighted to see familiar faces.</p><p>The day of my first appointment with Dr. Smith came shortly after that. I was ushered into a treatment room and spent about 15 minutes waiting and examining my surroundings. Then I heard a very disgruntled and loud voice from outside.</p><p>Uh-oh.</p><p>Dr. Smith came barging in looking supremely pissed off. He then proceeded to demand why I had asked to specifically see him. He was a very busy man! He did not have time for new patients!</p><p>What. The. F*#@.</p><p>First off, <i>I</i> did not ask to see you, <i>sir. </i>I didn't even know who the hell you were until I talked to your staff. They were the ones who determined it was best that I see you. Secondly, I am a new patient at your clinic. Scratch that, I am ANY patient at your clinic. Is that how you talk to people?? </p><p>I did not say any of this, but instead stared at him in disbelief and tried to reply evenly to his questions. After he settled down, read through my file, and asked me some real questions, he came to this conclusion:</p><p>"You're in real trouble, Missy."</p><p>No shit, Sherlock. He had obviously grasped that I was a truly difficult case and wanted ME to know that treating me would not be easy and the outlook was not good. I think he thought I would be rattled by this information, but none of this was new to me. I kept looking at him calmly and agreed with him with a simple, "Yep."</p><p>I informed him that I had been undergoing "experimental" plasmapheresis treatments. He literally laughed out loud at that and informed me that plasmapheresis hadn't been experimental since the 1980s. Nevertheless, he recommended that not only should we continue the treatments, they should be done with more frequency. We wrapped up the appointment and I held it together until I got to my car.</p><p>That's when I lost it. I was shaking and crying angry tears the whole way home. <i>This </i>was the guy I was going to have to see every month here? I was not okay with that. By the time I arrived at the house my tears had subsided, but I was still very upset. </p><p>I called the nephrology office and relayed my experience to the nurse.</p><p>She apologized profusely and needlessly said he was probably not having a good day. But she also offered up that I was welcome to be seen by another doctor at the clinic. She said the doctors often consulted with each other on cases, so even if I didn't see Dr. Smith regularly, he would still have an eye on my treatment plan. This sounded like a fabulous idea. She recommended a Dr. Lambda and set another appointment for me in a week's time.</p><p>My meeting with Dr. Lambda was like night and day from that with Dr. Smith. I liked him instantly. He seemed knowledgeable, did not come at me with scare tactics, and was warm and friendly. This I could work with.</p><p>Pheresis treatments in Phoenix would be done at Desert Samaritan Hospital in Mesa. I would become well acquainted with the nurses there over the next four years. There were only five stations for patients in the dialysis room and at least two nurses at all times, so there was a lot of down time and they enjoyed chatting with me. </p><p>My first treatment was done by a man named Terry, who was the head nurse of the unit. He offered me the external blood-warming machine which could be hooked up to the centrifuge and reheat your blood before returning it to you. That sounded delightful! One of my complaints about pheresis in the past was feeling extremely chilly during and after treatments. We got started.</p><p>About 15 minutes in, I suddenly became very nauseous and needed to vomit pronto. I did. </p><p>Well that wasn't fun. I had tolerated pheresis well in the past and the only difference was the blood warmer, so off it went. The treatment was finished without incident, though I was still freezing. But I will take being cold over having to barf any day.</p><p>After my first appointment with Dr. Smith I was so rattled I forgot to inquire about other doctors. My meeting with Dr. Lambda went so well I felt confident enough to ask his nurse about an internal medicine specialist, a neurologist, and a gynecologist. She had names for two out of the three. I ended up getting an OBGYN recommendation from the receptionist.</p><p>I do not remember why I didn't ask about a cardiologist. Probably because I felt I had enough on my plate already, and because I had become increasingly annoyed arguing with my Austin cardiologist about my migraine medication. My nephrologist could monitor my blood thinners, which was in my mind the only thing he was really doing at that point.</p><p>My medical team assembled, I settled into my life in Phoenix. I would become well acquainted with Dr. Lambda and my internal medicine physician, Dr. Chang, over the next four years. It was going to be a wild ride.</p><p><br /></p><p>*Name has been changed out of respect.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-YqcUdXLEvqE/YexH4GUOSmI/AAAAAAAAPuA/9jq_YsKAHHk3gYM43bPaTxY60CS5V9LAQCNcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1000" data-original-width="1500" height="213" src="https://lh3.googleusercontent.com/-YqcUdXLEvqE/YexH4GUOSmI/AAAAAAAAPuA/9jq_YsKAHHk3gYM43bPaTxY60CS5V9LAQCNcBGAsYHQ/image.png" width="320" /></a></div><br /><p><br /></p><p><i>Next up: <a href="http://mcsteans.blogspot.com/2022/02/what-hell-is-sed-rate.html">What the Hell is a Sed Rate?</a></i></p><p><br /></p><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-88153737614784236302022-01-15T13:51:00.003-06:002022-01-23T09:24:08.620-06:00The Dot-Com Bubble<p><i><a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Previously on The Diagnosis</a></i></p><p><br /></p><p>My first month post-transplant was spent isolating at home, wearing a mask out to appointments (I was ahead of my time), working on my stamina by taking increasingly longer walks around the neighborhood, and being bored out of my mind. The steroids were bothering me more than they had the first time I'd received a kidney and were making me antsy. I had trouble sleeping and my mood swings were terrible. Just ask Ryan.</p><p>I had high hopes for my second transplant. The doctor had given me time to be on dialysis and let the diseased first transplant finish its life. We had not used a living related donor. There were extra safety precautions post-transplant involving IV treatments (I don't remember what they were, sorry).</p><p>Despite all of this, within a month it was clear the FSGS had just not gone away. It must be something outside of the kidney at work here, something embedded in my blood or DNA. I don't know, I'm not a doctor or scientist. All I do know is that I was deeply disappointed. </p><p>That is not to say the transplant was immediately a failure or that we were giving up on it. Since plasmapheresis had shown some degree of effectiveness in the past, my doctor decided on maintenance treatments. A series of seven every-other-day appointments every four months. I may not have this kidney as long as I had hoped, but we would keep it working for as long as we could.</p><p>I wasn't thrilled about having to return to pheresis and exacerbating the annoyance was the check-in process. Each arrival at the hospital I would have to go through registration. Every. Single. Time. Like, why I had to fill out stupid forms and tell people my medical history every other day was beyond stupid and time wasting. You have a computer, USE IT. </p><p>There were two things that eased my irritation. One, I was already familiar with the staff and got to be entertained by Pam and the gang. Two, because of my dialysis fistula I no longer needed a temporary port, so no neck catheter this time. Yes, I prefer needle sticks to having that nonsense hanging off of my body.</p><p>Just when my health was returning to normal, my work life went into crisis mode. I can't imagine there's anyone reading this who wasn't alive around the turn of the century, but in case there is, let me tell you a tale of internet folly. Around 2000 there were a slew of small, ambitious dot-com start-ups. And they were all going to be fabulously successful. Internet was the future! We can't lose!</p><p>We lost. Bigtime. The dot-com bubble burst in a spectacular fashion, the Nasdaq falling 78% between 2000 and 2002. For the entire time I had been working at Human Code, Ryan had been side-eying our business model of overworking employees and spending massive amounts of money on work parties and monthly happy hours. "It's not sustainable," he repeatedly said. </p><p>I thought we were out of the woods after being purchased by Sapient. They were a huge company! Surely everything would be fine. </p><p>It was not. Previous to my transplant a good third of the office had already been canned. They were trying to trim the "fat" so out went the entire QA department as well as all of the production assistants. I was devastated. Not only were these essential employees, they were also my friends. </p><p>In July we came into work one morning and the entire staff was immediately corralled into the meeting room. Well this couldn't be good. Apparently Sapient was still struggling and not satisfied with just reducing our staff. When they acquired Human Code it was with the goal of getting into the gaming market. We were the only office in the company that worked as its own separate unit. Unfortunately that also made it easier to jettison the entire branch.</p><p>We were all toast. The only saving grace was that there were 2 million dollars worth of projects tied up in our office that we were uniquely qualified to finish. The Human Code representatives went to the bargaining table and came back with very nice severance packages in return for finishing out the projects. </p><p>Still, by the beginning of September I was out of a job. My severance pay would be good for a number of months, and finishing up my project for Sapient had led to hellish hours, so Ryan and I scheduled a vacation. September 9 we flew to Las Vegas.</p><p>For those of you keeping track you'll recall what year this is. Two days later we were awakened by Ryan's cell phone. It was Jason. Ryan yelled at me to turn on the tv. </p><p>"What channel?"</p><p>"All of them."</p><p>By the time we tuned in, both towers were on fire. We watched them fall in real time. I remember hugging my legs on the bed with tears running down my face.</p><p>Still in shock, we went into panic mode. We had no way of knowing the attacks were over and were sitting in the Luxor pyramid in Las Vegas. If ever there were a symbol of American excess and ridiculousness, we were sitting right in the middle of it.</p><p>Both of us hopped on our phones and called every single rental car company. They were already sold out. Planes had been grounded. From our window we had a very close view of the airport and it was chilling to see all activity stopped for three days.</p><p>We were scheduled to fly back on Wednesday. Since everyone was trying to get out at the same time, I spent a lot of time on the phone with American Airlines with no success. My mother sprang into action with her American Airlines Platinum Member Powers. Her Platinum status allowed her to actually talk to a real person. Then she turned on the tiny violins by telling customer support her daughter was stranded in Vegas and would soon run out of transplant medication.</p><p>We were booked a flight for Friday.</p><p>l took a couple of other trips that fall, taking advantage of my newly obtained free time. In October I travelled home by myself to Oklahoma to visit my family. The day before I left, Jeff the Cat had treated me to a goodbye "love bite". Which is to say he chomped the hell out of my leg.</p><p>Two days into my visit, the wound started looking nasty. I will spare you the details. The morning I was scheduled to return home I woke up with a fever. Transplant patients have to be extremely careful with spiking temperatures because of their suppressed immune systems. I called my transplant team who instructed me to go straight to the ER.</p><p>My mom and I spent the afternoon at Comanche County Memorial Hospital. The doctor lanced my wound and then I got a shot of antibiotics in the butt that made me yelp out loud. We went home and I went straight to bed. My fever broke in the night and my wound looked better by morning. Jeff the Cat was taken to the vet to get his incisors shaved.</p><p>For Thanksgiving that year Doug was not coming home. My mom, in one of her surprising moves, suggested the four of us (Mom and Dad, Ryan and myself) go to St. Thomas for the holiday. We were totally on board.</p><p>If you are ever looking to visit the Caribbean for the holidays I highly recommend it. Not that many people travel for Thanksgiving and the weather is amazing. We had such a great time when my dad wasn't trying to kill us driving on the opposite side of the street on cliffsides while attempting to record with his video camera.</p><p>I had been job hunting since I became unemployed, but the search kicked into higher gear the closer it came to the end of my severance. Ryan and I agreed to expand the search radius and in February I landed a software engineering job at the GPS company Garmin. The position was located in Tempe, Arizona. It was time to pack up and start a new chapter in our lives.</p><p>This chapter was admittedly light on medical details, and I could have just jumped to Phoenix, but 2001 was so discombobulated that I felt I needed to connect the dots a bit. There were great uncertainties in my professional life, but the temporary freedom of unemployment and a new kidney allowed me to travel a bit, and it was a nice change of pace not to have to deal with dialysis.</p><p>But Arizona was in our future and with it would come a slew of new challenges, most of which as per usual involved my health. This time, however, Ryan and I would be on our own.</p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-_OdMcn2zy-E/YeMlhWuhNFI/AAAAAAAAPoE/tyzslupdJRU4_cI1-DWAh1A34xNaBlDugCNcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"></a><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-_OdMcn2zy-E/YeMlhWuhNFI/AAAAAAAAPoE/tyzslupdJRU4_cI1-DWAh1A34xNaBlDugCNcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://lh3.googleusercontent.com/-ylKHZwn4Bgk/YeMl_8EJszI/AAAAAAAAPoM/es0R2mWOVecjAgwNvt8hm2_zl4qRUMWFACNcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="451" data-original-width="960" height="150" src="https://lh3.googleusercontent.com/-ylKHZwn4Bgk/YeMl_8EJszI/AAAAAAAAPoM/es0R2mWOVecjAgwNvt8hm2_zl4qRUMWFACNcBGAsYHQ/image.png" width="320" /></a></div><br /></div><br /><p><i>Up next: <a href="http://mcsteans.blogspot.com/2022/01/phoenix.html">Phoenix</a></i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-30366660694017741242021-12-07T12:03:00.004-06:002021-12-07T13:15:38.562-06:00Change Is Good?<p>A few months ago, discussion started happening at my dialysis clinic about changing the operating hours and schedule. The amount of patients had dwindled recently. Other clinics have opened in our area and frankly it's been a rough year to be a dialysis patient - a number of us didn't make it. So the powers that be were determining what it would look like to reduce the number of chairs they were using, (our clinic is pretty big, y'all - it has 2 sections) therefore limiting the amount of staff there at any given time.</p><p>All of this is understandable and it was just being floated as a possibility. They started asking patients how they would feel about starting at 5:30am instead of our current 6:30.</p><p>My answer was a more polite version of, "No. Yeah, no" and "hard pass". I was already getting up at 5:50am three times a week, I was not going to strip an extra hour of sleep from that.</p><p>But about a month passed and we heard no more of this nonsense. Perhaps they had decided to shelve the idea?</p><p>Fast forward to mid-November. I overheard a group of techs and nurses discussing "the new schedule" while I was on treatment. </p><p>Uh-oh.</p><p>My tech for the day was someone I'd worked with for 15 years (we'll call her Sue for privacy), so I was comfortable pressing her for information. Sue confirmed that yes, they were changing the schedule and if I had concerns I should talk to the assistant manager, who was in charge of this ridiculousness.</p><p>After treatment that day I softly knocked on her office door. Since I am pretty much a model patient and never make any noise, the office workers are always delighted to see me. She eagerly waved me in. I started off with (paraphrased), "I understand we'll be starting treatment at stupid o'clock in a few weeks. Can I not do that?"</p><p>I was basically asking if I could maybe move to the beginning of the second shift - starting at like 9ish. That was not an option, she said. We proceeded to have a very confusing conversation for the next few minutes as neither of us understood what the other was saying. She finally got up to retrieve the schedule so she could show me what she meant.</p><p>When she returned and plopped the binder on her desk, she found my name and said, "here - we have you at 3:15pm".</p><p>Oh. OH. </p><p>They were not trying to move me to 5:30 at all. They had changed my shift time completely. The Asst. Manager explained that because I'm the only one at the facility with such a short runtime, (I do 2.5 hours, which is really fast for dialysis) to try and stick me anywhere else would really throw off their streamlining goal. So they put me as the last appointment of the day.</p><p>I had two options here. I could throw a fit and argue that I had been there for 15 years and they better find me a spot more to my liking, OR I could learn to live with my new time.</p><p>I took a beat. On the surface I didn't like afternoon at all. I liked being able to get dialysis out of the way first thing in the morning. But as I started thinking about it I came around to the idea. There would be a lot of bonuses with this new time. I could get normal amounts of sleep every night. I could actually get stuff done in the mornings before I went. I could go for walks EVERY day instead of every other day!</p><p>Letting the Asst. Manager believe I was being a REALLY understanding and compassionate patient, I sighed and told her I would make it work. She thanked me and apologized. </p><p>Yesterday was my first day on the new schedule. I slept in until 8:00 and it was glorious. I had my coffee and a bagel. I went for a 2 mile walk (a little shy of my usual 2.5 miles, but I didn't want to push it) then spent the morning cleaning out my spice rack - a task that I had been meaning to do for a long time. Early afternoon I was at a bit of a loss, spending most of it in anticipation, not knowing yet exactly when I should leave. I showered, then spent the time looking at my computer and the clock.</p><p>I gave up around 2:30 and headed towards the clinic. Sometimes they run early so I wanted to be there in case my chair was available. </p><p>It was not. I waited about a half hour in the waiting room and started treatment just after 3:15. The good news was, I had Sue as a tech. I was worried that I would get a different group of techs that late in the day. Part of their consolidation efforts meant that the staff would work longer hours but fewer days.</p><p>Treatment was fine. Traffic was worse than I expected getting there (school zones) and better than I expected on the way back (wheeee!). I will say it was completely disorienting leaving the clinic when it was dark.</p><p>At home Ryan had just started dinner. We had selected taco salad for the evening - a meal that required minimal effort on both our parts. Still, both of us were dragging. Yesterday was Ryan's first full day of work at his new job. He hadn't gotten much sleep the night before and he was mentally and physically exhausted. </p><p>On my part I had about 5% energy level. I thought it would be easier seeing as I'd had a full night's sleep, but add in a full day of activity before treatment and I was very wrong.</p><p>Bedtime came around and instead of passing out, my body was still vibrating from treatment and I had a hard time drifting off. Around 5am I woke up with a migraine, so had to go take something for it and once again couldn't sleep for a bit. </p><p>The next time I woke up it was 8:30. Holy cats. </p><p>This morning I feel like I'm trying to walk through peanut butter. I'm sure a little of it is allergies, but most of it is this wacky new schedule. It's like how you feel the week of daylight savings, but dialed up to eleven. I need to figure out how to work with this so that I'm not regularly a mess on what are supposed to be my good days. </p><p>Anyway, I'm sure it will be fine in the long run. Perhaps I will even like it better. Just right now I'm a little thrown. Change is supposed to be good for you, so I'm not writing this off yet. It will take time, so I'm willing to be patient and make adjustments as needed so I can function as a human again.</p><p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-6OyyTDxUEYU/Ya-fWcreaAI/AAAAAAAAPOk/agsPh_40czIuD6hQUMQ6A7UwMgjV9YQoQCNcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1405" data-original-width="1145" height="240" src="https://lh3.googleusercontent.com/-6OyyTDxUEYU/Ya-fWcreaAI/AAAAAAAAPOk/agsPh_40czIuD6hQUMQ6A7UwMgjV9YQoQCNcBGAsYHQ/image.png" width="196" /></a></div><br /><br /><p></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-20777195866451800022021-09-12T16:48:00.008-05:002022-01-23T09:25:00.137-06:00Transplant Two<p><i>Previously on <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">The Diagnosis</a></i></p><p><br /></p><p>By early evening on Sunday of the fateful phone call a group had assembled at Brackenridge Hospital to await my transplant. Ryan and I had arrived around noon and quickly got down to the business of getting me checked in. Heather had been notified and Heather being Heather showed up at the hospital to wait with us. Mom, using her magical American Airlines Platinum Member Powers managed to join the party by six o'clock.</p><p>First matter of business as always when dealing with transplants was to draw a massive amount of blood. This was to be sent to San Antonio, which was a transplant hub for out-of-state organ donations. The kidney was coming from Utah, so, not close by. They would need to do a final match with our blood so no time would be wasted shipping a kidney cross country if it was not compatible. </p><p>Second order of business while we were waiting for lab results was a dialysis treatment for me. As I mentioned in <a href="http://mcsteans.blogspot.com/2021/01/transplant-one.html">Transplant One</a>, the healthier you are going into surgery the better. This time around I had not been walking two miles a day before the operation so getting one last cleaning of my system would have to do. I was a bit put out as I had hoped to be done with dialysis, but this would only be a three hour treatment. Too wound up to sleep, I watched episodes of the Simpsons and silently flipped the mental bird at the dialysis machine.</p><p>After that it was a waiting game. The four of us chatted in my room that looked out onto I-35 as nurses occasionally popped in with updates of "still waiting." I tried desperately to ignore my hunger as I was not allowed any food or drink until surgery and we didn't know when that would be. My last meal had been a Sunday morning bagel.</p><p>At midnight we sent Heather home. Ryan took pity on me and snuck me a Jolly Rancher. </p><p>Finally at 2:00 in the morning I was given the green light. The results of the final match were positive and the kidney was on its way to Texas. A nurse brought me some weird smelling surgical soap and I was instructed to go shower and use it liberally. Afterwards I put on a fresh gown and settled down for more waiting.</p><p>At 5am they came to transport me to pre-op. Mom and Ryan were allowed to come along, partially because the surgery waiting room was right next door and they would be spending their morning there. The transplant nurses were chatty and entertaining. One of them came up to us and asked, "would you like to see it?" </p><p>"It" being the kidney, which was in a small cooler I had not previously noticed. </p><p>It was six in the morning and I had not slept or eaten in almost a day. NO I did not want to see the kidney. Ryan also took a hard pass. My mother, on the other hand, lit up like a Christmas tree and hurried over to take a peek.</p><p>Luckily just as I was seriously veering into Nausea Land my best friend the anesthesiologist showed up to give me a Happy Hour cocktail in my IV. As the sleepies set in, the transplant surgeon arrived, punchy on coffee and adrenaline and loudly sharing that he had been awake doing surgeries for the last 24 hours. My last thought before drifting into unconsciousness was, "Wait, <i>what</i>......?"</p><p>Despite this last minute uncertainty, the surgery went very quickly and very well. I am pretty slender and like last time it was a laparoscopic procedure, so just a slice in my abdomen was needed to rewire everything. Ryan says he was so tired he laid face first on the Berber carpet of the waiting room and felt like he had barely drifted off before my mom was shaking him awake. He had carpet marks on his face for the next hour.</p><p>Just like my last transplant, this kidney started working immediately. There was of course the usual surgical site pain, but in general I felt better right away. It's still amazing to me how quickly kidneys can resume operation and also how much I had gotten used to a lower energy level on dialysis. My appetite returned with a vengeance, in part due to once again returning to steroids. I was doing so well that by Friday I got the all-clear to go home.</p><p>Ryan was a busy bee while I was at the hospital. Though he was there a good portion of the time, he was also preparing the house for my return. Cleaners came in to give it a good scrubbing and Ryan's parents met him halfway from Houston to collect Melbotis the golden retriever. We didn't want to kick Mel out, but he was a bit like Pigpen in that house, spending much of his time in the dirt under the front shrubbery and getting covered in burrs. Because of my high dose immunosuppression that first month, we would need to be extremely careful about germs.</p><p>My dad, who had been at an orthodontic course in Dallas that week, was in town the day I came home (my mom had departed a few days earlier). He brought us dinner Friday night and breakfast Saturday morning before returning to Oklahoma. During the Melbotis hand-off, Ryan's mom had loaded us up with enough frozen meals to last a week. </p><p>Things were going amazingly well, so of course that couldn't last. </p><p>A side effect not often discussed that commonly occurs with major abdominal surgery is severe constipation resulting in horribly painful stomach cramps.</p><p>During laparoscopic abdominal surgery carbon dioxide gas is used to inflate the area and make it easier to move things around. This gas can get trapped in your abdomen. In addition, many strong pain relievers like morphine used for post-op discomfort cause your bowels to go on strike. The weekend after my surgery my intestines began feeling like they were being stabbed by knives.</p><p>It was a miserable few days. Just unrelenting abdominal pain that couldn't be relieved. Adding to the awfulness was the fact that I was back on high dose steroids and couldn't sleep. Poor Ryan had to hear me moan for three days straight. </p><p>Things eventually started *ahem* moving again and the pain gradually lessened. Ryan had taken a few weeks off of work to keep our environment sterile and I myself got an entire month break from my job. I was keeping busy with a multitude of transplant related appointments, blood work, doctor visits, and some IV drips of various medications.</p><p>After that first month things started getting back to normal. I went back to work, we got Mel back, and I was easing off of the steroids, though a tiny dose would always be part of my transplant regimen. I felt better than I had in a few years. Dialysis could, for now, be an unpleasant experience in the rearview mirror and I was so grateful for my freedom.</p><p>I can't wrap this up without acknowledging the painful truth that someone died for me to receive this kidney. All the information I was given was that the donor was 20 years old and had perished in a motorcycle accident in Utah. It's not an easy decision to have to make when a loved one passes unexpectedly, and it's especially hard with someone who is so young. I always advise people if they would like to be organ donors to have that discussion with your family now, when they're not in crisis mode. Hopefully they will never need to make that decision at all, but that little indicator on your driver's license means nothing without a family member's approval, so make it easier on them.</p><p>When you become an organ donor, you can donate up to seven different organs. That's a lot of people's lives you could save! And as someone who received one of those organs I guarantee you your generosity will never be forgotten. I will never forget that family in Utah who suffered a terrible loss and made a difficult decision in the face of sorrow. Thank you so much for your gift.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-J4Sdot_GGFU/YT5ygZVvkOI/AAAAAAAAOlc/TAhKudpk2VodvwVzrB-WVxFRkHAmwuXAgCLcBGAsYHQ/s612/istockphoto-1168945054-612x612.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="612" data-original-width="612" height="320" src="https://1.bp.blogspot.com/-J4Sdot_GGFU/YT5ygZVvkOI/AAAAAAAAOlc/TAhKudpk2VodvwVzrB-WVxFRkHAmwuXAgCLcBGAsYHQ/s320/istockphoto-1168945054-612x612.jpg" width="320" /></a></div><br /><p style="text-align: center;"><br /></p><p><i>Up next: <a href="http://mcsteans.blogspot.com/2022/01/the-dot-com-bubble.html">The Dot-Com Bubble</a></i></p><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-1287704672004425692021-08-29T18:10:00.001-05:002021-09-12T16:50:32.246-05:00The New Normal<div><i><a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Previously on The Diagnosis</a></i></div><div><br /></div><div><br /></div><div>After ten days of being poked and prodded at the Heart Hospital, the only long term treatment deemed necessary upon my release was the addition of blood thinners to my medication regimen. For the rest of my life. Once you start the Coumadin, you're on the Coumadin. I would need to be more careful about not banging into things, which for me was quite the challenge. Also I had added a cardiologist to my physician collection. </div><div><br /></div><div>I settled into my dialysis routine, which was a more stable lifestyle than dealing with the last gasps of a transplant kidney. It may have been more stable, but it was time consuming and I hated it. Thankfully I didn't have much time to dwell on the misery of treatments because I was unbelievably busy. Dialysis (including the waiting room, hook up and take off) was fifteen hours a week, while work was more than forty. Whatever freetime I had left was spent planning the wedding. Because of the narrow window of availability for our desired wedding venue, we had just six months to make everything come together. I still can't believe we pulled it off.</div><div><br /></div><div>Although I was very excited about the wedding, I wasn't crazy about actually having to "make decisions" about things like dresses, decoration details, invitation designs, etc. The cake tasting I was on board with. Who doesn't like cake?</div><div><br /></div><div>My soon to be mother-in-law, Karen, had a friend in town who dabbled in event organizing and was nice enough to guide us through the process. That took a lot of pressure off of us, being able to go to her house, look at samples of things and just point. Still, it was some work. I remember spending many evenings after work putting together invitations and trying to address envelopes in my very neatest handwriting.</div><div><br /></div><div>The wedding was in April of 2000, which is a great anniversary date for remembering how long you've been married. The ceremony took place at a venue called Green Pastures in South Austin, a beautiful property consisting of a large historic house with a wide wrap around porch, a huge lush yard complete with a gazebo for outdoor weddings, and peacocks. Everyone loves the Green Pastures peacocks.</div><div><br /></div><div>I started the day with dialysis, but it was made a little easier by the presence of my mother. She brought pictures of me in my dress to show my nurses and techs who I knew well by this point. I had set up shop the night before in my parents' hotel suite so as to not be seen by the groom. After a short nap I went to get my hair done, visited with family members, and then jetted over to Green Pastures to get dressed.</div><div><br /></div><div>The wedding was magical. We couldn't have asked for better weather for an outdoor event. You never know what you're going to get during April in Texas. It could be scorchingly hot, pouring rain, or a late season cold snap could make guests too chilly to be outside. Luckily we had none of that. It was sunny and very pleasant. </div><div><br /></div><div>The reception was a blur, but what I remember most is thinking how strange and beautiful it was to see this odd assortment of people together. A wedding is the only time you will ever have your closest compadres and kin from different parts of your life all in one place at one time. Childhood friends, college mates, work buddies, aunts, uncles, parents' close pals all dancing and laughing in one room. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TxLCYTOrJgQ/YSwTpG7PXkI/AAAAAAAAOh4/cLp6Yk_NJtwRW5TRUnxiNIN4PnyqgOfrACLcBGAsYHQ/s2048/PXL_20210829_230548949.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://1.bp.blogspot.com/-TxLCYTOrJgQ/YSwTpG7PXkI/AAAAAAAAOh4/cLp6Yk_NJtwRW5TRUnxiNIN4PnyqgOfrACLcBGAsYHQ/s320/PXL_20210829_230548949.jpg" width="320" /></a></div><br /><div style="text-align: center;"><br /></div><div>Of course the best part of a wedding is actually getting married. Little changed for us in a day to day sense as we had already been cohabitating for two years, but it made me blissfully happy to be officially linked with the person I loved most. </div><div><br /></div><div>A couple of weeks into May we flew to Orlando for a week long honeymoon at Disney World. Look, I know it isn't the most glamorous or exotic destination, but we wanted to go somewhere in the U.S. and not in the middle of nowhere to make dialysis easier.</div><div><br /></div><div>Probably the biggest downer about dialysis is that there is no escape. When you take vacation from work, you don't have to go to work for a week. You can't do that with dialysis. The workaround is that most clinics take travellers. There is a lot of planning upfront, but your home clinic does most of the work for you. Finding a facility nearby, scheduling dates, sending your treatment orders and recent labs. The only thing you can't control is your treatment time. If you're lucky and the clinic isn't busy you may be able to request morning or afternoon, but let's be honest, that never happens. All clinics are busy.</div><div><br /></div><div>So dialysis ate into our honeymoon a bit. My treatment times happened to be in the morning and not the middle of the day, so that made it a little easier. We got to start our park visiting around noon on those days. There was still time to buy mouse ears, meet Goofy, and ride<i> It's a Small World</i>.</div><div><br /></div><div>Summer rolled around and our lease was up at our apartment. We moved into a rental home the size of a shoebox coincidentally located in the Green Pastures neighborhood. Our beloved golden retriever Melbotis entered our lives. I enjoyed having a house of our own, even if we had to occasionally put out electrical fires in the seventy-year-old home. </div><div><br /></div><div>In the fall my little fish company was acquired by a much bigger technology fish, Sapient Corp. We were all required to attend orientation in groups of about 15 at one of the corporate offices around the country. My friend Heather and I went to the San Francisco office so it would be easier for me to get dialysis. The meetings were three days long, so I would have to miss a day to go get treatment. Doug living in the area made that easier, as he could provide transportation. </div><div><br /></div><div>Each group from Human Code had a leader who was in charge, to make sure we weren't sneaking out past curfew and whatnot. I'm kidding, we were not in high school. Still, even though I had told management back home I would be missing one of the three days of training, our trip leader had somehow missed the memo. When I mentioned I would be taking off the next day for dialysis, she just blankly looked at me and said, "well, you gotta do what you gotta do," sounding a bit put-out.</div><div><br /></div><div>I found that amusing, but it was a reminder that for most people, dialysis is not on their radar. I had completely blindsided her with a statement no one expects to hear from a twenty-five year old.</div><div><br /></div><div>The great thing about dialysis in San Francisco was that the clinic there ran three hour treatments, which BLEW my mind. This was practically a vacation. Cutting a whole hour off of the runtime? Amazing.</div><div><br /></div><div><div>At the beginning of 2001 things calmed down, which was fine except that all of the changes of the past year had helped keep my mind off of the grind of dialysis. A sliver of hope arrived when my doctor gave the green light for allowing me to pursue a second transplant.</div><div><br /></div><div>There was a theory behind leaving me on dialysis for a year and a half before another kidney. My doctor felt maybe the transplanted kidney needed to shut off completely to give the disease a chance to settle down.</div><div><br /></div><div>He also nixed the idea of using another living related donor, letting Doug off the hook. Though there was no indication the disease was hereditary, there was also no explanation for why my disease came back into my transplanted kidney. Perhaps we needed to try some unrelated-tissue.</div><div><br /></div><div>I don't remember much about the testing process to get on the transplant list back then, but I'm guessing they took a lot of my blood (which this time could be procured during dialysis) and consulted my cardiologist. The kidney transplant program in Austin was based out of Brackenridge Hospital, which used to be in the middle of downtown. Neither the hospital nor Austin's transplant program exist anymore in 2021.</div><div><br /></div><div>Now it was a waiting game. It could be three years or longer before I heard anything. Dialysis became a depressing slog. Mentally and physically it was wearing me down. I kept not feeling well by the end of my treatments. An excerpt from one of my journal entries at that time reads, "<i>got sick again at dialysis yesterday and then it ruined me for the rest of the day. I couldn't even go into work - even after I slept for a while. I'm getting really tired of that happening. I do realize that dialysis can't always go smoothly, but this seems to be more of a regular occurrence these days.</i>"</div><div><br /></div><div>May 13, 2001 was a typical Sunday morning. Ryan and I had gone with Jason to enjoy some Einstein Bros. bagels and coffee. Almost immediately upon our return home the phone rang. It was the transplant coordinator, Melanie. She had a kidney for me.</div><div><br /></div><div>I nearly dropped the phone in surprise. Kidneys weren't supposed to come this quickly, was this really happening? It turned out they had a perfect match for me and because that is so rare, if it happens you get first dibs. </div><div><br /></div><div>My life turned around in an instant as we made plans to be at the hospital for an unknown amount of time. I gathered my things, said goodbye to the pets, then made a very important phone call. I called my mom and told her I had the best Mother's Day news. She knew immediately without me having to say another word.</div><div><br /></div><div><br /></div><div><i>Next up: <a href="http://mcsteans.blogspot.com/2021/09/transplant-two.html">Transplant Two</a></i></div></div><div><br /></div><div> </div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><br />mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com1tag:blogger.com,1999:blog-8450918409991661424.post-28187033557805782312021-05-20T12:08:00.003-05:002021-08-29T18:12:51.557-05:00Matters of the Heart<p><a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Previously on The Diagnosis</a></p><p><br /></p><p>In my last post I talked about starting dialysis and mentioned the endurance of my fistula that I have had for over twenty years. The first month it was in operation, however, it had major issues. Clotting issues.</p><p>One of the disturbing qualities of having a worm-like vein on your arm is that you can look at it and see it moving. Like, you can see your heartbeat in your arm. For the longest time, I could also hear it when I would lie down to sleep. I guess the sound waves carried through my bedding up to my pillow or something, but it was super weird and distracting. </p><p>As gross as that is, it's also how you know your fistula is working. In the first few weeks they started using mine, it would frequently clot. As in, there is a clot of blood blocking the vein and it can't be used. You can see it not moving. This is not unusual, by the way. It's not uncommon to be in a dialysis clinic and to see someone leaving after a discussion of, "you're clotted and we need to send you to the Access Center for a declot." </p><p>Back when I started dialysis, there was no outpatient Access Center like there is now. I was sent to the brand new (new in 1999) Heart Hospital of Austin and the cardiothoracic surgeon who had created the fistula was summoned to do the procedure. Declots are no biggie, they don't take very long and you don't get general anesthesia. Just the stuff that makes you fall asleep and not remember anything.</p><p>By the third declot in under a month they decided further investigation was necessary. This being the Heart Hospital, they did a standard EKG. Not happy with how that looked, they did an echocardiogram. </p><p>I had two sizeable blood clots in my heart and there was damage there from what appeared to be a past heart attack.* </p><p>The staff of Heart Hospital were beside themselves. This was the Heart! Hospital! It was as if they suddenly imagined themselves as the stars of ER. A young adult presents with mysterious symptoms in a sparsely populated cardiac hospital. Admit her immediately! Heart Doctors, Assemble!</p><p>So here I was, in another hospital for who knows how long to be poked and prodded and studied. I was already depressed about having to start dialysis and now there's something seriously wrong with my heart?</p><p>Not to be sidelined when another diagnosis was looming, my mother came into town. We spent the first day moping about my predicament while I got a dialysis treatment and new test announcements. What we needed was some sliver of good news.</p><p>Good news? Wait, I had good news! Ryan and I had recently been having more serious discussions about getting married. It was a done deal in my head. I could tell my mom about that!</p><p>She was thrilled, and we immediately went into planning mode. Ryan showed up at the hospital that evening tired from work and was accosted with the news that he was getting married.</p><p>Let me rewind just a bit and tell this to the best of my ability from Ryan's perspective. Unbeknownst to me, Ryan had plans. Before I landed myself in the hospital, we had been scheduled to take a trip up to visit my parents in Oklahoma. Ryan had intended to ask their permission to marry me on that trip, probably while I was taking one of my daily naps I assume. And then when we returned to Austin make a very lovely and romantic proposal.</p><p>With a few words to my mom, I had ruined all of that. Leave it to the McBride ladies to strip any kind of surprise or romance from the process. Ryan did his best to cover his disappointment and called to tell his parents the news. </p><p>Suddenly we had Steanses arriving at the Heart Hospital from Houston. Not that they didn't already care about my well-being, but it's a different scenario completely when it's now your future daughter-in-law who is awaiting a potentially life-altering second diagnosis. </p><p>So I had lots of visitors during my stay, and not just family members. Because the Heart Hospital was so new, it had a dearth of patients, which if you've been to any hospital ever you know is quite the rarity. Usually it takes a nurse 15 minutes to answer your call button. Here they came into my room to check on me constantly, sometimes two at a time. They all got to know me pretty well and were even in on the wedding planning with some giving suggestions for venues.</p><p>I'm sure Ryan was beating his head against the wall as he watched all of this slip out of his control.</p><p>I don't remember much about the testing I went through. I know there was a lot of it and I would have something or other done about once a day. Cath lab, x-rays, this terrifying procedure where they stick a tube down your throat while you're still awake (this ended up not being a big deal as they gave me the neat medication that makes you forget all of that). </p><p>My stay ended up lasting 10 days, which is an eternity when you actually feel okay and are not sleeping all day. I blame the duration on two factors and they are related.</p><p>One, my assigned cardiologist was a youngish man with a lot of enthusiasm for this case. He was going to FIX me if it was the last thing he did. Which I appreciate! To some extent. You don't want a disinterested doctor, but at some point it's okay to just shrug and do the rest of the testing outpatient if the patient feels okay.</p><p>My cardiologist was only enabled and encouraged by the brand new Heart! Hospital! They had all of the latest technology and tests to really get to the bottom of the mystery that was me.</p><p>After a while it got annoying and I missed being outside. I could roam around the halls and it was a beautiful facility with big sunny windows and and large open areas, but it was still depressing. I wanted to go home.</p><p>Finally my doctor threw in the towel. He chalked my clotting up to what had been the root of all problems all along, my kidney disease. One, as I have mentioned before, my disease is largely unstudied and there are still a lot of unknowns surrounding it. Two, one of the peculiarities of my pre-transplant lab-work linked to my disease was an unthinkably high cholesterol level. We're talking in the 900s. (Normal cholesterol lives in the 100s)</p><p>Thirdly, transplant medications can be hard on your heart. I had already had high dose steroids on a number of occasions and add in immunosuppressants and that's a lot for your heart to deal with. Poor little guy.</p><p>So what to do now? My doctor started me on blood thinners. This would hopefully break up the clots in my heart and prevent me from needing further declots for my fistula (it did). He also suggested not taking my migraine medication as he had a suspicion it was also not doing me any favors. I countered with, "OR, I could keep taking it and not be in the hospital every other week barfing up a lung." He let that one go.</p><p>Finally I was free. I remember the sunny, beautiful day in October when Ryan pulled the car around the front of the hospital and packed me inside. I rolled the window down on the way home to feel the wind blowing on my face. Back home at the apartment I was greeted by Jeff the Kitten who I'm not sure ever knew I had been gone.</p><p>A couple of weeks later Ryan took me out to a nice dinner up at the Arboretum. I assumed it was a celebration of our 4 year dating anniversary. Afterwards we walked the woodsy path behind the shops. As we stopped to admire the view, Ryan pulled an engagement ring out of his pocket and asked me to marry him. This is what I will always remember as his beautiful proposal, and I never saw it coming. For once I didn't ruin a surprise.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-2lWkKNv7H58/YKaZmtvKPtI/AAAAAAAAOFw/DY0SF4T_Kug_Nq1tkomR9y-3nmKuV4iOwCLcBGAsYHQ/s1024/heart2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="678" data-original-width="1024" src="https://1.bp.blogspot.com/-2lWkKNv7H58/YKaZmtvKPtI/AAAAAAAAOFw/DY0SF4T_Kug_Nq1tkomR9y-3nmKuV4iOwCLcBGAsYHQ/s320/heart2.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p><p><br /></p><p><i>A/N This entry is dedicated to Ryan, for putting up with the McBride ladies. I don't deserve you, but I'll keep you forever if that's okay.</i></p><p>Up next: <i><a href="http://mcsteans.blogspot.com/2021/08/the-new-normal.html">The New Normal</a></i></p><p><br /></p><p>*<i>Remember in the <a href="http://mcsteans.blogspot.com/2021/02/austin.html">Austin</a> entry when we had to call an ambulance when I was on the floor of our apartment bathroom not able to move? Yeah, we think that was this incident.</i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-65673670970913985162021-04-29T10:40:00.006-05:002021-07-01T15:53:30.208-05:00Dialysis One<p><i>Previously on The Diagnosis: <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Master List</a></i></p><p><i><br /></i></p><p><i>Prologue: For various reasons I've been procrastinating on this post. I'm currently on dialysis and have been for more than fifteen years. The first time around, I did it for a little under two years. It's a much different experience now than when I first started, so I've been having trouble getting into the mindset of those early days. The other issue is that the week of the freeze in February really shook up my perspective. These days, dialysis has become such a part of my life that I don't tend to think about it unless I'm there. I took it for granted, and that was something that came to terrifying light when it just wasn't available. And I didn't know when I'd be able to get it. I never want to go through that again. Dialysis suddenly went from something I had to do to something I actively wanted to do. Which is not how I felt about it in the early days. At all.</i></p><p><br /></p><p>I started dialysis in September of 1999. That date is not only stamped in my brain, it's also stamped on my Medicare card. When you are an ESRD (end stage renal disease) patient, you automatically get entered into the Medicare system. Transplant patients get a certain number of years on Medicare (immunosuppressants are crazy expensive) but dialysis patients get coverage indefinitely. You don't want to know how much a single treatment costs. Oh you do? It's about 2500 dollars last I checked. For a single treatment. That you need three times a week to stay alive.</p><p>Just like plasmapheresis, to receive dialysis you need an access. I still had my chest port from my last pheresis round so I could start right away, but that is not a permanent solution. Ports can easily get infected the longer they stay in your body so that is not ideal for long term treatment. For example, one gentleman at my current clinic refused to get a permanent access and he was constantly in and out of the hospital with infections. That man is no longer with us. Get an access, kids.</p><p>If your veins are good enough, the optimal access is called a fistula. Basically they take one of your existing veins, usually in your arm, and supersize it. In surgery they will connect the chosen vein to an artery to increase blood flow to that vein. This results in a vein that can support the blood flow rate needed for dialysis and consequently literally enlarges the vein. It looks like a long worm is living below your skin. I know, gross. But it's also very helpful when they're trying to stick large needles into your arm. </p><p>I've never had one, but if they can't find a suitable vein, the other option is a graft. This involves inserting an artificial (plastic) vein into your arm or leg. Not as ideal as a fistula as they are more prone to infection, but still much safer than a port. Some people go through many different accesses during the span of their dialysis treatments.</p><p>Folks, I have had the same fistula since 1999. It's old enough to drink! I won't say it's unheard of, but I do get lots of surprised looks when I mention this to healthcare workers. I don't know why I've been so lucky - I tend not to question it and just be thankful. Here's the other thing about fistulas: they keep getting bigger. My arm worm now looks like a small arm snake. There was a time when I didn't care what it looked like (mostly when we lived in Phoenix and it was too damn hot to wear sleeves) but these days I try not to wig people out. If I'm leaving the house it's in sleeves that at least cover my upper arm.</p><p>Once my fistula had matured (it takes about 6 weeks) they started using it for treatments. This meant I could finally get rid of the port I had hosted in my chest for nearly three months. Having that port removed was one of the most painful appointments I can recall. My body had basically started to absorb the tubes and it had to be cut out of me. With no anesthetic. I remember just staring at the popcorn tiles of the exam room ceiling with tears running down the side of my face. But it was good to finally get it out.</p><p>My first dialysis clinic was not super close to our apartment. It was (and still is) off of I-35 south of the river. My appointments were and have always been Monday/Wednesday/Friday. Tuesday/Thursday/Saturday is another option, but I wanted to make sure I kept my weekends free to preserve a sense of normalcy even though MWF was challenging with work.</p><p>I had to get up at 4:30 for a 5:00 chair time, which really meant I was getting on the machine anywhere from 5:10-5:30. After I was done I would rush home to take a shower then make my way into work. The upside of this schedule was that I got to miss the I-35 rush hour coming and going.</p><p>The first couple of treatments were designed to get you used to the process. My treatment times would be 4 hours each, but the first day I did 3 hours, then the next 3 and a half. I was walked through my new dietary guidelines. Having had kidney disease for years at this point I was used to food and drink restrictions, but now I would be limited to 32 oz of liquid per day. They even had a thermos set out as an example and I just stared at it in horror.</p><p>In addition to filtering your blood, the kidneys also produce urine to expel the filtered toxins. When the kidneys stop working....well you get the idea. Dialysis not only cleans your blood, it removes extra fluid from your system that would normally get flushed out when you pee. Which I don't anymore. If you think that's weird, you would be correct. I'm great on road trips and airplanes.</p><p>Every treatment you get weighed before and after your session. Each patient has a "dry weight" that indicates how much you are supposed to weigh without the extra fluid. The goal during dialysis is to get you down to that dry weight. The pre-weigh-in tells the technicians how much weight you have gained between treatments so they know how much fluid to pull. This is why it is essential not to drink too much, because there is a limit to how much liquid they can actually pull from you at a time. Too much too fast can lead to massive leg cramps and/or your blood pressure crashing.</p><p>The dietary restrictions include monitoring how much phosphorus and potassium you are eating and drinking. So, most healthy foods. It's a fun diet. That was sarcasm. I cheat with some things, because it's kind of impossible not to - you just have to find the right balance. And every patient is different - while some really have problems with phosphorus build up, that's never been a problem for me. Potassium on the other hand...I so much as look at a french fry and my potassium spikes. So I had to learn what did and did not work for me.</p><p>The actual procedure itself took some getting used to. Once my fistula had matured, they started using needles in my arm. Dialysis needles are very large to accommodate the rate of blood flow needed for the procedure. Most non-dialysis needles range from 24 gauge (for pediatrics) to 16 gauge (IVs for surgery). The smaller the number, the larger the needle. Dialysis needles are usually 15 gauge. Mine are currently 14.</p><p>Twenty years ago at my clinic they offered me lidocaine shots to numb the stick site. I absolutely took them up on this. It still hurt, but not as much as two 15 gauge needles going into my arm. The lidocaine effectiveness was hit or miss, but it was still worth the effort. After the needles were in place they would start pulling blood from your body and you settled in for four hours.</p><p>Four hours is a long time to be hooked up in a chair, even if it is a comfy recliner. As I suspected, plasmapheresis did provide me with some preparation going in as to what the experience would be like, but the real challenge was the duration. Pheresis can be anywhere from 1-2 hours, but I was in that chair from 5:30-9:30. That's a long time. </p><p>I eventually got into a routine. Since it was so early in the morning and I was generally exhausted during this time in my life, I used the first couple of hours to sleep or to try to sleep as it wasn't always easy to drift off with machines beeping and people talking. What I do remember about that clinic was that they tried to keep the lights dim unless they were working on a patient. The same cannot be said about my current facility. </p><p>Because I had to be careful not to disturb the needles in my arm, I would curl up in a ball on my left side. I brought a blanket with me because in addition to it being generally chilly in the room, I was also missing about a pint of blood from my body at any given time. You know what a doodle bug looks like when it's hiding in its shell? That was me during treatment. </p><p>Sleeping is a great way to pass the time, but my brain was only able to hibernate for about 2 hours if I was lucky. Then I still had 2 hours to kill. Every chair had a tv, so that was an option and most patients do watch tv, but I've never been able to tolerate it. This was back before handheld devices, so social media/surfing the internet was not available. </p><p>TV just felt to me like I was wasting time. I know that's a ridiculous thought, but that was my mindset. Instead I read. Coming off of college where any reading time was spent curled up with a thick textbook, reading for fun felt like a luxury. Because I was working so much, I didn't get to do that much of it at home, so I took advantage of my 2 hour imprisonment to try and entertain myself a little with a book.</p><p>Not that it was fun. At all. Though dialysis is a mostly pain-free procedure, by hour 3 I would start to feel a little funky. The process itself was energy draining, but the pulling of fluid had me sometimes feeling borderline nauseous. I remember staring at the clock, mentally urging time to speed up on frequent occasion.</p><p>I wouldn't say my health improved that much once on dialysis, but it certainly stabilized. One good thing about starting treatment was that my migraines settled down. I would still get them, but they were responding to the medication again. The frequent trips to the ER were on hiatus. Always try to look for the positives in any situation!</p><p>But looking for positives was easier said than done. Though I knew it was necessary for survival, I was not happy about this stage of my disease. It took a lot out of me and was a major adjustment that I never got used to during my first round of dialysis treatments before my second transplant. What kept me going was everything outside of dialysis. I was happy with Ryan, I loved my job when I wasn't working all night, and I was a mid-twentysomething with good friends. </p><p>I had hoped to include the next development in my medical history here, but hadn't realized how <i>much</i> there is to describing dialysis itself so I will save that for another day. This entry might be on the short side, but I feel like this is a lot of information to throw at you and we're at a good stopping point. Thank you for sticking with me!</p><p><br /></p><p><i>Next up: <a href="http://mcsteans.blogspot.com/2021/05/matters-of-heart.html">Matters of the heart</a></i></p><p><br /></p><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-23807084241238388132021-02-19T18:05:00.007-06:002021-02-20T09:07:38.906-06:00How long can you go without dialysis?<p>It's been a week. I thought instead of dumping this all on facebook or contacting people individually I would catch you up via blog post.</p><p>If you live in Texas or have heard of Texas, you know what happened and is still happening. Last week, the forecast was predicting a massive snowfall with record low temperatures for Sunday night/Monday morning. But the ice actually started falling the previous Thursday. That made getting to dialysis a little treacherous but I just drove slowly and made it there fine. </p><p>Sunday evening I got a call from my clinic saying they would be closed on Monday. Then it started to snow. And snow. At 2am the power went off. The smoke alarm started beeping and driving Scout mad. We made an attempt to go back to sleep.</p><p>The house was freezing when we woke up. Ryan and I fished out our almost never used long johns and dressed in many layers. I was thankful we possess a plethora of blankets. We spent the day reading comics and I attempted unsuccessfully to work on a thousand piece puzzle. Our stove is gas so we were able to light the burners with matches and cook food for dinner - early before the sun went down.</p><p>At 6:30 we retired to the bedroom with Scout and her dog bed. We shut the doors and stuffed towels underneath to block the air. I believe there were 6 blankets on the people bed. We spent the next four hours just talking and I am so thankful that Ryan and I don't really ever run out of conversation.</p><p>The next morning was even colder as it had dropped to 7 degrees overnight. The morning was spent much the same way as Monday morning. In fact, I was puzzling on my puzzle at 11am when I glanced up at a beep and noticed the lamp next to Ryan had switched on. I gave a yelp of cheer and then we were scrambling to charge our phones and check on the house.</p><p>I need to take a moment to praise Ryan for being great in a crisis. He's always one step ahead of the game. He picked up our grocery order the previous Thursday, which was smart because shelves were being cleared that weekend. He also made sure all of the faucets were dripping and the outside faucets had their covers on. When we got power back he realized the hot water lines in the master bath had frozen and spent roughly an hour warming them with my hair dryers. And it worked! Also he took advantage of our precarious power situation and lit the gas fireplace in the living room.</p><p>My first thought was: <i>need hot shower now.</i></p><p>I cranked the hot water all the way up and defrosted myself. I am so helpful.</p><p>At 6:00 I decided to heat the oven and throw one of the frozen pizzas in there. At 6:20 the power went out again. The pizza was defrosted enough to be edible, but we were looking at another evening in the dark. Luckily the fireplace produces quite a bit of heat, so we spent the evening warming ourselves in front of the flames.</p><p>Ryan slept downstairs on the couch to keep an eye on the gas fireplace. The next day the power came back on at 3:00pm and has been on ever since.</p><p>Meanwhile, our water pressure had been decreasing steadily. Some of our neighbors had already lost water completely. On Wednesday the city issued a boil water notice.</p><p>The bad weather kept coming. What was supposed to be snowfall on Monday on top of already icy roads continued as the freezing temperatures kept travelling dangerous. </p><p>I had been keeping in touch with Satellite Dialysis via texting one of our techs I've known for years and calling the company 888 number. First they asked me if I thought I could wait until Wednesday for treatment. Since it didn't look like I had a choice, I said sure why not. Tuesday I texted my tech again and she asked if I could make it until Friday so they could take care of critical patients if they opened as early as possible on Thursday.</p><p>My first instinct was HELL NO. It had already been four days and this was asking for three more days. By the next morning I realized I was doing pretty well on my fluids and I wanted the other patients who were not great at controlling their intake to be able to get taken care of. I texted my tech and said Friday would be ok.</p><p>Starting Wednesday I started feeling a fullness in my stomach I assumed was fluid, but I wasn't that much over my dry weight. It turns out filtering toxins from your blood is very important. </p><p>Thursday I had a sneaking suspicion my clinic had not opened so I called directly. The hospital down the street had started moving patients and sending some home because they had lost water and were struggling with power. There was no answer when I called. I texted my tech knowing full well I was taking advantage of her giving me her cell number, which they were not supposed to do. She confirmed that they were not open, that she didn't know when they would open and advised I call the 888 number again.</p><p>The woman I spoke with could not have seemed less interested. It was as if she were reading from a script and made note of the fact that she lived in California so it's not like she had control of the situation. My clinic would *maybe* open this weekend. Goodbye!</p><p>At this point I lost it. The stress of the previous week combined with my rapidly declining health sent me into a panic and I just started bawling. Ryan let me get it all out. Though it was still freezing outside I needed some air so I went on the front porch to gulp some oxygen. Next, still wrapped in my blanket I sat on the floor in front of the back window to sniffle and look at the snow and ice covered trees. </p><p>Ryan suggested I text my tech again. I did, and explained exactly how I was feeling and what they had told me. She said to call them back and stress that I could not breathe. There were a handful of clinics open the next day that I could possibly get in to.</p><p>The next woman I spoke with was a complete 180 from the first lady. I'm sure it helped that I was still teary and she could tell I was distressed, but she took me seriously and said she was on it. Within 15 minutes I got a call from the head honcho of Satellite in Austin who I knew when she was the head of our clinic. She took note of my condition and said I would be going to the front of the line since I was having difficulty breathing and it would have been a week since my last treatment. They were going to try to get me into Kyle or a clinic up north by the Domain or Round Rock. At this point, despite the weather, I would drive wherever they wanted me to go.</p><p>I went to bed curled up face down on my knees as it was the only way I was even remotely comfortable. At 2am, still not asleep, my cell phone rang. It was Satellite. They asked me if I could go to Kyle at 7am and knowing I would not be getting any sleep until I got treatment I jumped at the appointment time. Then she suddenly said, <i>"oh, I just got an email that south I35 is open today. Could you be there at 6:30?"</i></p><p><i>Could</i> I? South 35 was closer to me with no traffic than my own clinic. I was so relieved I went downstairs to update poor sleeping Ryan on the situation. I went back to bed, set my alarm, and flopped around whimpering in discomfort.</p><p>I'm pretty good at driving in terrible weather, but it's still nerve wracking. I left with plenty of time on the clock and made it to the clinic at 6am. There were 3 other cars in the lot idling and the door was locked. At 6:15 I reached for my phone to call them when it rang. </p><p>It was a tech from the clinic up near the Domain. He said there had been a miscommunication and I was supposed to be at his clinic, who had chairs available whenever you showed up this early in the morning. The Domain was 16 miles from my current location, up I35 and 183. I35 is so well traveled ice was not an issue, but 183 is basically one long bridge and was really dangerous. With so few cars on the road at that hour I was able to drive super slow and finally made it.</p><p>Patients were only getting 2 hour treatments, which was not a huge deal for me since I do a short runtime of 2 and a half hours normally. I also couldn't run as fast as usual because they only had 15 gauge needles when I use 14s at my home clinic. A stroke of luck, however, since staff was being dispersed to all open clinics, a nurse from my facility that I've known for years was there and volunteered to stick me.</p><p>I finished treatment, feeling the fullness in my stomach gone, but replaced by a migraine I had self-inflicted by pulling too much fluid. Still felt better than the previous night. Google Maps routed me home via Mopac, which....you'd think there was no ice on the road the way people were flying past me. I'm really relieved and shocked I didn't see anyone flip over.</p><p>I was met in the garage by Ryan, who was carrying a large tupperware container to go collect snow. We had finally lost water. As I ate breakfast Ryan had switched to the cooler and was lugging volumes of snow upstairs to the guest bathroom so we could flush toilets. What a mess, and we still don't know when we're getting water back or when my <i>next</i> treatment will be.</p><p>Though I can breathe much easier today, this week destroyed me. I never want to go that long without dialysis again and will fight harder to get a spot next time. I'll be dealing with the repercussions of this past week for a while. Not only am I exhausted, I just don't feel all that great. The panic of not getting treatment is gone, but I've felt flattened today. I even had a low grade temperature for a while this afternoon.</p><p>This is by no means over, but I wanted to get this experience written down, not only for myself but for the many people who have been asking about me. I appreciate the concern and hope my honesty did not scar you. Thanks for the support everyone!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-JUEJqRBCJrA/YDBR4cWqInI/AAAAAAAANmg/TAynC7ywzYkJZt46lBoPp2N5RU17eL_TACLcBGAsYHQ/s375/dialysis.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="375" src="https://1.bp.blogspot.com/-JUEJqRBCJrA/YDBR4cWqInI/AAAAAAAANmg/TAynC7ywzYkJZt46lBoPp2N5RU17eL_TACLcBGAsYHQ/s320/dialysis.png" width="320" /></a></div><br /><p style="text-align: center;"><i>The elusive dialysis machine</i></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com1tag:blogger.com,1999:blog-8450918409991661424.post-53263434698368352232021-02-11T17:22:00.008-06:002021-06-22T17:10:51.045-05:00Austin<i>Previously on The Diagnosis: <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Master List of Posts</a></i><div><br /></div><div><br /></div><div>It was the best of times, it was the worst of times. The first year of life out on my own was exciting in its newness but also truly a test for me, for Ryan, and for our relationship. My transplanted kidney was sputtering to its end, and in its wake brought a slew of challenging migraines that became increasingly resistant to the Imitrex. This meant more and more trips to the hospital. Because I was focused on other aspects of my life, the specifics of my health during this time are difficult for me to recall. Ryan remembers hospital trips as a blur of handing me barf buckets. Wasn't I a catch?</div><div><br /></div><div>But I'm getting ahead of myself, so let's back up. After graduation I moved an hour up the road to Austin. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-aoxlcm--70w/YCW9Q1Eaa7I/AAAAAAAANig/YZzPncDrSUg7oOO4AoiCeSq6t5mF4WLcgCLcBGAsYHQ/s612/Austin.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="368" data-original-width="612" src="https://1.bp.blogspot.com/-aoxlcm--70w/YCW9Q1Eaa7I/AAAAAAAANig/YZzPncDrSUg7oOO4AoiCeSq6t5mF4WLcgCLcBGAsYHQ/s320/Austin.jpg" width="320" /></a></div><i><div style="text-align: center;"><i>Austin! None of these buildings were there in 1998.</i></div></i><div><br /></div><div>Ryan still had two weeks left on his apartment lease, so we loaded all of my stuff into a storage unit until we could move into our larger place. At the end of May we transported all of our possessions across the apartment complex to a two bedroom unit so we could spread out a bit and have an office.</div><div><br /></div><div>Though we'd dated for two and a half years at this point, it had been a semi-long distance relationship. This would be the first time we would be in each other's space 24/7. It was wonderful to actually share our lives full time, but it was also an adjustment. We had to learn how to live together, which is a completely natural thing. </div><div><br /></div><div>Ryan already had part time work at UT and over time turned that into a full time position. My situation was a little more dicey. It was a stressful three months before I landed a job, which had me feeling a bit lost. Part of that anxiousness was getting dropped from my parents' insurance. Transplant drugs are not cheap and don't even get me started on the cost of plasmapheresis should I need it again. Luckily there was a grace period, but I needed something soon.</div><div><br /></div><div>In addition to looking for work, I was setting up my local health care. There was a nephrology Transplant Center located in the top floor of a medical building next door to Seton Hospital not far from our apartment. I would be spending a lot of time there in the next few years.</div><div><br /></div><div>My new doctor was competent, but not my favorite. I remember his name, but I won't use it here as I don't want to badmouth anyone personally. He reminded me a little of a gameshow host and even after four years couldn't remember any details about my life outside of my medical chart. Once he even brought his new full size bullmastiff into the dialysis clinic with him when he was making rounds. He was definitely a character.</div><div><br /></div><div>In August I secured a position as a programmer at a multi-media startup called Human Code. They had actually been around for a number of years at this point, but had yet to go public and still felt like a smallish organization. I would be working for the consumer division making PC games for children. </div><div><br /></div><div>My first day was a Friday (I suppose to ease me into things) and I was nervous. So nervous that when I woke up my stomach was twisted in a way that I knew I would be paying for after work. Though mentally I felt much better once I got there and met my project partners, I was still physically off all day. My friend Winnie worked in the Art Department there and she took me to lunch along with a number of others. I could barely eat, my stomach still protesting.</div><div><br /></div><div>I was sick the rest of the weekend. It was an Imitrex-resistant migraine, but I managed to stay out of the hospital this time. Years later I would connect the dots between my migraines not responding to Imitrex with my kidney deteriorating but it's not an obvious link. I stayed in bed keeping the lights low curled up with instruction manuals for the programming engine used at Human Code trying to get up to speed.</div><div><br /></div><div>My job was challenging for me. Though I enjoyed the actual work, my fellow employees and the environment, the deadlines often made for hellish hours. This is unsustainable for a regular healthy twenty-something so it certainly put a strain on me. Since we worked for clients, our deadlines were set in stone. If we had a deadline and we weren't finished at 5:00, we stayed until our deadline was complete, no matter how late it was.</div><div><br /></div><div>I was constantly paying the price for working all hours. Every single time a finished project would result in a trip to the hospital. Ryan was increasingly frustrated with my company and my insistence upon continuing to defend them. In retrospect he was 100% in the right, but I was a stubborn stupid kid at her first job not knowing any better. We had a lot of arguments around this topic because it was heavily impacting both of our lives. Ryan knew before cohabitating the responsibility of partnering with a chronically ill person. He had proven time after time how compassionate and reliable he was. But the fact that I was consciously making the problem worse by working crazy hours made him understandably upset. </div><div><br /></div><div>I have heard a lot of feedback from people saying they admire me for my strength and I appreciate that but I also want to stress that I am not and was not perfect. There were a lot of mistakes and poor choices along the way and working stupid hours was one of the biggest.</div><div><br /></div><div>I also want to make clear that there were plenty of good times amongst the bad. In between the health crises we had a lot of fun. I enjoyed being out of school and not having homework. I enjoyed having an income and being able to provide for myself. Many of Ryan's friends from college had planted themselves in the Austin area and they became my friends. I also made buddies at Human Code that I still keep in touch with today. One of them, Heather, was my maid of honor at my wedding and is one of my favorite people. Though she lives in Seattle now, we still chat frequently and visit when we can. </div><div><br /></div><div>But the hiccups continued to interrupt our lives. In January of 1999 I was hit with a particularly potent migraine. I can't remember if I had come home from work or had just not gone in that day, but Ryan says I called him home from work. Feeling more awful than usual with a headache, it got to the point where I was lying on the bathroom floor unable to respond to him.</div><div><br /></div><div>He called an ambulance.</div><div><br /></div><div>When EMS arrived, I think they assumed they were dealing with an overdose. A reasonable assumption for an outwardly appearing healthy young adult who was unresponsive. I was awake, though. I remember everything. It was as if the only function my body could perform was to concentrate on breathing. I felt paralyzed. It was terrifying.</div><div><br /></div><div>Ryan gave them the rundown on my medical history and they sped me to Seton Hospital. Based on my frequent migraines, it was assumed the incident was just a more severe episode. I was given the usual meds and probably stayed at least one night at the hospital.</div><div><br /></div><div>Months later I would undergo extensive heart tests. One of those tests revealed I had suffered heart damage at some point. They said it was likely a silent heart attack (one that is not diagnosed as such at the time). I have no doubt in my mind the ambulance affair was that event. It explained a lot.</div><div><br /></div><div>That spring, not only was I dealing with more frequent migraines, I was also once again struggling with anemia and had to restart the Epogen shots. I was constantly exhausted and losing my appetite. My steroid-induced diabetes from the previous spring had come under control, so I was eating a lot of foods I'm sure were terrible for me, just to try and up my calorie intake.</div><div><br /></div><div>Soon my lab-work started looking squirrely. By May, action needed to be taken. Fighting like hell against the idea of starting dialysis, I discussed the possibility of once again attempting plasmapheresis and my doctor agreed. Nine treatments, every other day.</div><div><br /></div><div>This time I was getting a port placed further down on my upper chest. Thankfully I would not need turtlenecks in the Austin summer. I figured out the reason for the neck catheter previously had been that it's an easier procedure and we were in a time sensitive situation. This time I got a local anesthetic so it didn't hurt as much.</div><div><br /></div><div>The dialysis unit at Seton hospital had room for four hospital beds and one recliner for the pheresis machine. It was headed up by a woman named Pam, who I would come to know quite well over the next three years. She was the most down to earth, genuinely kind, and highly entertaining nurse you'll ever meet. It would make my time there much less stressful.</div><div><br /></div><div>The pheresis treatments seemed to work and the catheter was removed. I spent the rest of the summer continuing to struggle with keeping up with work and my various ailments. By August things were looking dire but my doctor agreed to have one last go at pheresis.</div><div><br /></div><div>This time it didn't work. I was down to my last option. Dialysis.</div><div><br /></div><div>I have come to the end of this section, but I don't want to leave you on that note. I've been on dialysis twice for a total of seventeen years now and it's not the end of the world. It is an adjustment and the first couple of years were more difficult than they are now. But there was also a wonderful thing happening in my life then. I would be getting married in the spring.</div><div><br /></div><div><br /></div><div><i>AN: This entry is dedicated to Mr. Ryan Steans for going above and beyond at a time when the rest of his friends were enjoying their early twenties like normal people. I don't know what I did to deserve you, but you are my strength.</i></div><div><i><br /></i></div><div><i>Next up: <a href="http://mcsteans.blogspot.com/2021/04/dialysis-one.html">Dialysis</a></i></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-18844617965757749572021-02-04T15:24:00.003-06:002021-02-12T18:11:13.282-06:00Vaccine Fail<p>Monday morning when I got home from dialysis I signed up with Austin Public Health to get pre-approved for the current round of vaccines. Though our clinic is technically supposed to be receiving the shots "at any time," we've also been in that designation for almost a month. </p><p>I made it through the virtual paperwork and got in their system. The schedule showed no available appointments, which was not a surprise. </p><p>As I was setting aside my laptop to go upstairs for my post-dialysis nap, my phone dinged with a text. </p><p><i>We have appointments available, please check now!</i></p><p>Oh boy! Maybe someone cancelled. I quickly hopped back online to secure my spot. There were an awful lot of spinning icons and then, <i>"sorry our page is being bombarded please try again." </i>Over and over I went through the process, mindlessly pressing buttons until EUREKA! </p><p>There was a spot at 11:00-11:30 that morning, 15 minutes from my house. I snatched it up.</p><p>Furiously I ran upstairs to throw on real pants and brush my teeth. I grabbed my keys, purse, n95 mask, and jumped in the car. I was practically glowing on the drive over, thinking back on the previous hellish year and seeing a tiny hole in the box where we'd all been stuck.</p><p>The safety protocols were greater than I'd seen anywhere else, even at my doctor's office. They had me blow my nose at the door before entering, which I thought was strange, but the last thing I was going to do was question anything happening if it meant getting my shot.</p><p>There were only two people in front of me in the hallway. What luck! They must be at the end of their 11:00s. I got all checked in and was handed a plastic bag with testing equipment in it. </p><p><i>Well, they must be testing everyone that comes in for a shot, just for data purposes. That makes sense.</i></p><p>This would be my first ever covid test. I cooperated and sat still while I got my brain poked for 10 seconds. Then the tech said, "ok, well that's it! Your results should be back in a few days."</p><p>Wait. Ohhhhhh no.</p><p>Me: "I was here for the shot, though."</p><p>Her, looking at me like a poor dumb creature: <i>"There must be a mistake, we don't do that here."</i></p><p>Me: "But...I had an appointment..."</p><p>Her, really wanting to get to her lunch break: <i>"Maybe it was a different location, you can talk to the people up front." *mentally nudging me out the door*</i></p><p>As I slowly made my way out the exit I realized what had happened. While frantically clicking buttons that morning, I'd accidentally tapped the one that said "Schedule Covid-19 test" instead of "Schedule Covid-19 vaccination." They were all the same color.</p><p>I shakily made my way to the car and was horrified to find myself actually crying. Mentally berating myself, I was furious with my mistake. How could I have been so stupid? I had to miss my nap and get poked in the brain for absolutely nothing.</p><p>Mostly it was the letdown that I wouldn't be getting my vaccine today, or likely anytime soon. I'd been hearing horror stories of people trying and failing over and over to get an appointment. It was as if I'd finally made it out of that box with the hole in the top only to find I was trapped in another bigger box.</p><p>I've been getting up early every day this week since then to try and nab an appointment only to be greeted each time with <i>All appointments are currently full. </i>I'm not at all irritated that others are getting their shots before me. Everyone that needs shots in this category needs them. There just aren't enough vaccines to go around.</p><p>If there's any real irritation, it's that our dialysis clinic should have been first in line for this 1B group. Half of my fellow patients are in wheelchairs and most others have trouble walking. Most of them have diabetes and a good chunk have heart and/or lung problems. These are very sick people. </p><p>Also I'm irritated that I'm a dum-dum.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-HEl9gz52cTc/YBxlynL38hI/AAAAAAAANhg/UVlgBcVHHk8SR7p_Y6fMxIvCNnrVauCMACLcBGAsYHQ/s2048/vaccine.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1360" data-original-width="2048" src="https://1.bp.blogspot.com/-HEl9gz52cTc/YBxlynL38hI/AAAAAAAANhg/UVlgBcVHHk8SR7p_Y6fMxIvCNnrVauCMACLcBGAsYHQ/s320/vaccine.jpeg" width="320" /></a></div><i><div style="text-align: center;"><i>Someday...</i></div></i><p><br /></p><p><i>AN: Update! It's Feb. 12 and I got my vaccine from HEB this afternoon. </i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com1tag:blogger.com,1999:blog-8450918409991661424.post-11666408952914993782021-01-31T12:58:00.005-06:002021-02-11T21:39:09.246-06:00Plasmapheresis and Calculus II<p><i>Previously on The Diagnosis: <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Master List of Chapters</a></i></p><p><i><br /></i></p><p>Ryan and I both ended up taking a victory lap at college. He was working on adding a second major and I was still playing catch up from my lost transplant semester. This put both of us in single apartments so we were without roommates for the first time. </p><p>I had managed to mostly stay out of trouble for a long while. Though I still went in for regular check-ups, my "first" senior year saw no hospital stays, no biopsies, no signs of rejection. This good luck streak came to a screeching halt at the end of the first semester of my last year of school.</p><p>My creatinine had once again been creeping up as Christmas break grew near. Also, I had gained an alarming amount of weight in a short amount of time. I can't remember the specifics of why my mother flew in to attend an appointment, but it must have been that we knew things were not going well and we needed all hands on deck to make some decisions.</p><p>Dr. Riley had IDEAS. First off, the weight gain was most likely water retention. I had struggled with this off and on through my whole illness, but didn't know it could get this bad. My diuretic would need to be increased. We would employ the usual tactic of oodles of Prednisone for the creatinine clearance. And this time he wanted to try an experimental* procedure called plasmapheresis.</p><p>Plasmapheresis can be used for a number of medical procedures, including plasma donation and treating autoimmune disorders. In my case the plasma in my blood would be separated from the red blood cells and replaced with albumin. It all takes place in this 70s sci-fi looking machine that has a centrifuge you can actually watch spinning your blood because it has a slidey-clear top like a convenience store ice cream freezer. Oh, and then they give you your blood back. Mostly.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-erj1dHE-3nc/YBbI7F4DmiI/AAAAAAAANg8/LWQh8kzAvy8OLAlb6Kj52WRFiKvjQruHQCLcBGAsYHQ/s800/pheresis.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="600" height="320" src="https://1.bp.blogspot.com/-erj1dHE-3nc/YBbI7F4DmiI/AAAAAAAANg8/LWQh8kzAvy8OLAlb6Kj52WRFiKvjQruHQCLcBGAsYHQ/s320/pheresis.jpeg" /></a></div><div style="text-align: center;"><i>beep boop whirrrrr</i></div><p>My mom and I were on board with this plan, because the alternative would be starting dialysis, which...hard pass. Dr. Riley was ready to get started right away. There would be no going home for me this Christmas. He wanted nine treatments every other day. </p><p>I would need a central line for the speed and volume of blood needed for the exchange that a small vein would not be able to handle. They were going to put it in my neck.</p><p>The good part about "getting started right away" is that you don't have time to process and get freaked out about what's about to happen. The bad part is that "oh shit, we're doing this <i>right now." </i>I honestly to this day don't know how they got away with doing this procedure in a normal room with absolutely NO local anesthetic or happy drugs, but it happened.</p><p>Dr. Riley was going to insert the catheter himself, which I didn't realize he was qualified to do. I always thought procedures like this would be done by a cardiothoracic surgeon. His regular nurse assisted and I swear her calming voice was the only thing keeping me from bolting. Basically I had to lie on a table with my head hanging off the end. My mom was there holding my hand. </p><p>It was essentially: "Don't move or this could go poorly." *STAB* *STAB*</p><p>Not the most comfortable procedure I had ever undergone, but at that point I had moved onto worrying about the pheresis itself. I was sent home that day with a bunch of painkillers for my neck and would need to be back at the hospital the next day for what we started calling the "oil change."</p><p>I was quite nervous. Though this procedure differed from dialysis, it was certainly related. In fact pheresis machines are usually located *in* the dialysis units of hospitals. Both treatments remove your blood, do something with it, then give it back to you. I suppose in a way it was a good way to introduce me to the idea, yet that did little to calm my nerves.</p><p>The first treatment went quite well. The nurses were super nice and walked me through everything they were doing. Though the neck catheter was still very sore, it made hooking me up to the machine incredibly easy and painless. Then my job was to sit there for the next two hours. I watched a movie.</p><p>There were two notable side effects to finishing a pheresis treatment. One, it made me feel like I was softly vibrating and this would go on hours after I was finished. Two, I was already incredibly anemic and the procedure strips away even more blood cells. There was one day I had to stop twice leaving the hospital to sit down because I was seeing stars. </p><p>Though I had to stay in San Antonio that Christmas, I was not without visitors. My mom remained with me on the front end and was joined by my dad and Doug closer to Christmas. Obviously not everyone stayed in my little apartment, so they got a hotel room. I was accompanied by various family members including my brother (which impressed the hell out of me) to treatments during their stay. We had a makeshift Christmas in my apartment.</p><p>After the family departed Ryan took over. He would have a hectic break, traveling back and forth between Austin, Houston, and San Antonio. We'd been dating two years at this point, and he was proving himself to be quite the source of strength, comfort, and humor. He accompanied me to a number of treatments.</p><p>One night just for a change of scenery, Ryan and I went back to Austin. We went over to our friend Rob's house that evening. Because of the unnerving tubing sticking out of my neck, I had taken to wearing turtlenecks in public. Ryan started calling the catheter "The Bells of St. Jamie." It was not common knowledge that I was undergoing any kind of therapy. To mess with Rob, Ryan leaned over mid-conversation and pulled down the turtleneck. Rob jumped about a foot. </p><p>The plasmapheresis treatments finally came to an end. My creatinine was back down and thanks to the massive amounts of the diuretic Lasix I was taking, I had shed all of my water weight. Turns out I had been carrying twenty pounds of it. Dr. Riley allowed me to start tapering my Prednisone as well.</p><p>Removing the neck catheter was not a walk in the park. Getting the tape off that had been there for over two weeks was the worst part. Dr. Riley told me not to look when he got to the removing the tubes part. He instructed me on taking a deep breath in, then giving a good exhale. While I was busy blowing out air, he pulled out the tubes. I looked.</p><p>The tubes were so. long. I couldn't believe that mess had been in my body. Gross.</p><p>Spring semester started, my last at Trinity. I had already completed my Communications degree and all I had left were classes to finish my Computer Science major. The majority of my time would be spent in the Comp Sci building, which was quite convenient for someone not at the top of their health game. Since I lived off campus, I drove my car to school and was easily able to park right outside of the building. The only non-CS course was in the next building over and that was Calculus II.</p><p>Calculus II was the bane of my existence that spring. I would rather sit through plasmapheresis all semester instead of taking this class. I took Calculus I three years earlier to complete my math/science requirement and quite enjoyed it. Not only was Calculus II a different beast entirely, I struggled to remember what I had learned in Calc I. Everyone else in the class had just taken it the previous semester. The professor also made a point of trying to call on each student once a class. I never knew the answer.</p><p>Because I spent a lot of time in the Comp Sci building, I was good buddies with the department secretary, Barb. Trinity was a small school, so this was not that strange. Barb let me hang out in her office during lunch breaks and she knew all about my medical troubles.</p><p>About a month into the semester, I arrived home at my apartment one night and realized I had left my wallet in the computer lab. The next morning it was not there. I went to Barb.</p><p>Barb was on the case. She asked around to no avail and then suggested we go to the tapes. We spent the rest of the morning fast forwarding through security footage of the computer lab. You could very clearly see my wallet on the table and then after the cleaning crew came through....not see it.</p><p>Barb contacted the cleaning company but warned me there was little chance it would be recovered. To console me she offered up an extra large brownie someone had brought to her. I scarfed it down, thanked her for her help, then went home to make all of the appropriate lost card phone calls.</p><p>Very quickly after arriving home I started getting leg cramps. Guessing that perhaps I was low on potassium, I drank some orange juice. The leg cramps were soon so bad I couldn't walk. I crawled over to the phone to call nurselink at the hospital Transplant Center.</p><p>The doctor on-call said "get thee to the hospital ASAP." I waited until I thought I could use my legs for driving again and somehow made it over to the ER. Blood samples were collected and vitals were taken. I had a pulse of 150 and glucose level of over 500.</p><p>One of the side effects of Prednisone I had not had the pleasure of experiencing before then was steroid-induced diabetes. Basically the brownie set things off and then I made the situation worse with the orange juice. I would remain in the hospital for the rest of the week. Mom came down and Ryan showed up on Friday. The hospital stay included more needle pokes than I'd ever experienced in one day and an uncomfortable lung scan. At least it was better than taking the Calculus II test I missed.</p><p>Once I was stabilized I was sent home with more medication and would need to follow a low-sugar diet in addition to watching my sodium intake. Oh, and I would have to start checking my blood at home for glucose with finger pricks four times a day. Cool.</p><p>Two weeks later on a Sunday night I was studying for a different test and started to feel sick. It was a horrible evening. I will spare you the details, but I was awake all night getting sick in all possible ways, bringing a pillow into the bathroom with me to just lie on the cool floor. </p><p>The next morning I called my mom. She had a good friend in town who came over to drive me to the ER again. I was really scared about getting sick in her nice car, but my stomach played nice for the trip. </p><p>At the hospital my temperature was 103 and I had severe dehydration. What I thought was food poisoning was another infection. They kept me for a couple of days and after a round of antibiotics I felt much better and was released. My mother (present as always) had been using my car and had left it in the hospital parking lot for me when she departed for the airport via taxi. I made my way to the parking lot around noon, ready to go home.</p><p>My car wouldn't start.</p><p>I generally try not to complain as there are plenty of people that have it worse off than me, but I had a genuine moment of <b><i>"really, universe???"</i></b> Taking a beat to close my eyes and sigh, I made my way back into the hospital to locate a pay phone (pre-cell phone days, kids!). I called Barb.</p><p>Barb located one of my classmates who was willing to drive all the way out to northwest San Antonio. He was there in 45 minutes and jumped my car for me. After allowing me to thank him profusely, he went on his way and I was finally able to go home.</p><p>Interesting note, I am able to record this period of time with some accuracy because I started keeping a journal when I was on pheresis. The entry immediately after the "jumping the car at the hospital" incident starts off with the sentence, "I just got really depressed for some reason." *facepalm*</p><p>I managed to make it through the rest of the semester with no more hospital visits. My glucose came under control and with the Prednisone tapering I began to lose my steroid weight. Ryan and I were planning for the future and had decided I would relocate to Austin post-graduation. We would be getting an apartment together. It would save us money when we'd be spending our free time together anyway, and it would also be reassuring with my frequent complications to be rooming with someone I trusted to be there for me.</p><p>Despite Calculus II, I did finally graduate. I was looking forward to moving north to start my adult life and living with Ryan. It would be an eventful chapter in our lives. New city, new job, new friends, new doctors, and as always, new medical challenges.</p><p><i><br /></i></p><p><i>*I say "experimental" because plasmapheresis had been used in other locales for years at this point. For example when I showed up in Phoenix and called it "experimental" the doctor laughed in my face.</i></p><p><i>Next up: <a href="http://mcsteans.blogspot.com/2021/02/austin.html">Transplant one struggles for dear life</a></i></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-13436041320520358132021-01-31T12:05:00.022-06:002023-05-07T16:01:45.537-05:00Master List for The Diagnosis<p><b>Links to all entries of The Diagnosis:</b></p><p>1. <a href="http://mcsteans.blogspot.com/2021/01/the-diagnosis.html">The Diagnosis</a></p><p>2. <a href="http://mcsteans.blogspot.com/2021/01/the-side-effects-of-elective-surgery.html">The Side Effects of Elective Surgery</a></p><p>3. <a href="http://mcsteans.blogspot.com/2021/01/transplant-one.html">Transplant One</a></p><p>4. <a href="http://mcsteans.blogspot.com/2021/01/college.html">College</a></p><p>5. <a href="http://mcsteans.blogspot.com/2021/01/plasmapheresis-and-calculus-ii.html">Plasmapheresis and Calculus II</a></p><p>6. <a href="http://mcsteans.blogspot.com/2021/02/austin.html">Austin</a></p><p>7. <a href="http://mcsteans.blogspot.com/2021/04/dialysis-one.html">Dialysis One</a></p><p>8. <a href="http://mcsteans.blogspot.com/2021/05/matters-of-heart.html">Matters of the Heart</a></p><p>9. <a href="http://mcsteans.blogspot.com/2021/08/the-new-normal.html">The New Normal</a></p><p>10. <a href="http://mcsteans.blogspot.com/2021/09/transplant-two.html">Transplant Two</a></p><p>11. <a href="http://mcsteans.blogspot.com/2022/01/the-dot-com-bubble.html">The Dot-Com Bubble</a></p><p>12. <a href="http://mcsteans.blogspot.com/2022/01/phoenix.html">Phoenix</a></p><p>13. <a href="http://mcsteans.blogspot.com/2022/02/what-hell-is-sed-rate.html">What the Hell Is a Sed Rate?</a></p><p>14. <a href="http://mcsteans.blogspot.com/2022/03/phoenix-pheresis-phunzone.html">Phoenix Pheresis Phunzone</a></p><p>15a. <a href="http://mcsteans.blogspot.com/2022/04/migraines.html">Migraines</a></p><p>15b. <a href="http://mcsteans.blogspot.com/2022/05/some-additional-thoughts-on-migraines.html">Some additional thoughts on Migraines</a></p><p>16. <a href="https://mcsteans.blogspot.com/2022/09/dialysis-two.html">Dialysis Two</a></p><p>17. <a href="https://mcsteans.blogspot.com/2023/01/transplant-three.html">Transplant Three?</a></p><p>18. <a href="https://mcsteans.blogspot.com/2023/05/matters-of-heart-second-part.html">Matters of the Heart, the Second Part</a></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-80884055673339480512021-01-24T18:08:00.006-06:002021-08-30T17:18:32.284-05:00College<p><i>Previously on The Diagnosis: <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Master List</a></i></p><p><br /></p><p>After the transplant I settled into learning how to function as a human again and the spring of 1994 was uneventful. In April I got to go for a weekend to visit my buddies at Trinity and take care of some business, getting my summer school classes approved, meeting with my advisor, and taking my place aside my roommate for the next year to secure a room in our preferred dorm. I would be suitemating with Shannon and Erica and rooming with our friend Leslie.</p><p>Transferring entry level classes was fairly easy and I was going to be getting two of them out of the way from Cameron University at home in Lawton that summer. At that point I had just twelve hours at Trinity under my belt and I was woefully behind. By mid-way through July summer school was over.</p><p>My mother was a planner and spontaneity was not her strong suit, so when she did something unexpected it was delightful. Doug and my dad started a tradition of going on a week long canoe trip in the Boundary Waters Canoe Area in Minnesota that summer, which left us ladies alone at home. Mom came to me with an idea. Let's hop on a plane and go visit Aunt Helen (her sister) and Uncle Hans in Calgary!</p><p>It was the first time I had ever travelled with her for fun that had not been planned out months in advance. I wish she had done it more often, because it brought out this mischievous side of her I didn't get to see very often that was quite hilarious because we weren't doing anything wrong or breaking any rules. It was just refreshing not to have a plan on a vacation for once.</p><p>Though the spring and summer were healthy on the kidney front, they were not without obstacles. My friend the migraine returned. I had seen a neurologist in town as a precautionary visit and he prescribed Imitrex injections. They were new at the time and were a game changer. Before this medication there was basically nothing you could take at home that would actually get rid of the headache. You would have to just ride it out by lying in a dark room for a day, or have to go to the hospital to get the good stuff.</p><p>About a month before I went back to school I got hit with a whopper of a migraine. Being the chicken that I was, I called my mom at work. Though the injections looked fairly simple, (they were packaged in a way that you just had to put the cartridge against your skin and press a button) I doubted my ability to be able to stab myself. Mom came home and gave me the injection.</p><p>The sensation of the medication in my system was overwhelming and having already hit the nausea stage of the migraine I immediately ran to the bathroom to throw up. But afterwards I came back to lie on the bed and felt the Imitrex doing it's work. Within 20 minutes the migraine was completely gone.</p><p>The next time I needed a shot, we were on our way back from our yearly visit to Minnesota. I woke up in the middle of the night, feeling the unmistakable pain in the left side of my head. Knowing that I would be leaving to go back to school soon and wouldn't have my mother around to give me shots, I decided to be an adult. Very quietly and in the dark, since my parents were sleeping in our hotel room, I located the shot in my suitcase and took it into the bathroom. </p><p>I managed to set it up, identify a spot on my right upper thigh I determined looked like the least painful spot I could imagine, and push the button. Something I didn't mention earlier, Imitrex hurts when injected. But it only lasts a few seconds. Somehow I kept quiet while this was happening, then stayed in the bathroom as the migraine quickly subsided. I had done it.</p><p>That simple act of giving myself a pre-packaged shot felt like such an achievement. Knowing I would be able to easily take care of migraines on my own was such a relief and took away my one reservation about returning to college.</p><p>I started the fall semester back at Trinity with a jump up to fifteen hours like a normal student. Though I was not technically a sophomore yet due to my lack of hours, I still allowed myself that classification. I was getting into the swing of college, managing my classes much easier now that my brain was not so logy. Aside from the smattering of migraines and sometimes early morning trips to the pharmacy to procure more Imitrex, it was a smooth fall.</p><p>During Christmas break, my creatinine was once again reading high. Dr. Wenzl wanted to put me on a regimen of Solu-Medrol (iv steroids) every other day for 10 days. That meant getting up at the crack of dawn to drive to Oklahoma City every second day. My mom went with me a few times, but I made the drive with my brother once and once by myself. I have a strong memory of driving solo in the cold and dark listening to the entire Nutcracker Suite feeling very independent.</p><p>Other than the iv stick, the injection itself didn't hurt. It took a while because of the sheer volume of liquid going into my veins. The worst part was the taste. The nurses had warned me before my first treatment that Solu-Medrol leaves an aftertaste in your mouth and recommended chewing gum during the injection. It helped. I know it sounds strange that something going into a vein can reach your taste buds, but I've experienced it with a number of medications. </p><p>The steroid treatment seemed to do its job and I went back to school for my spring semester. All was fine until I had another questionable blood test in early April. My San Antonio doctor wanted to do another biopsy.</p><p>I had to take a couple of days off from school, but the biopsy went fine. It's amazing what perspective you get from two major surgeries and countless medical tests. This was no big deal the second time around and I had lots of company. My mom had of course flown in as she always did, but as a bonus I got a visit from all of my roommates plus two other friends. </p><p>But the best part of that hospital stay was the moment my doctor came in and announced that he saw no signs of FSGS recurrence in the biopsy sample. This was fabulous news.</p><p>My glee lasted approximately another month and a half, enough to get me through the rest of the semester. During my first appointment back home from college we discovered my creatinine was again climbing. Dr. Wenzl broke the news that it was entirely likely the biopsy sample had not captured the part of the kidney that was actually sclerosing and that I almost certainly had recurrent FSGS.</p><p>My mom and I were deflated. We were supposed to be leaving for a trip to the Galapagos Islands in a week's time. Dr. Wenzl agreed to let me go, but supplied me once again with a healthy prescription of steroids. This time it would be 40 mgs instead of 60.</p><p>The trip to Galapagos was amazing. The Islands are strictly protected so as not to interrupt the delicate and rare ecosystem, so you have to go on a tour with a guide. Our group consisted of about 15 people and our home for the week was a medium-sized yacht. Never was I so glad I don't suffer motion sickness. </p><p>There was a lot of hiking, snorkeling in the afternoons, soaking up fresh air and making socially distanced friends with the wildlife that were not at all afraid of humans. Each night we met in the group area of the ship and had a lesson on what we had seen or what we would see the next day from our knowledgeable guide. It was a once in a lifetime experience.</p><p>When we returned to real life and returned once again to Children's Hospital, my creatinine had dropped to not only a good number for me, but a good number for a healthy person. Dr. Wenzl joked that he wished he could send all of his patients to the Galapagos and credited the combination of steroids and vigorous exercise for my recovery.</p><p>The summer after that was uneventful. I did not take summer school, but instead had lined up a part-time internship at the local news station. I also shuttled my grandmother to and from doctor's appointments. In my spare time I read massive amounts of detective novels.</p><p>When my dad went off on his canoe trip, my mom once again surprised me by suggesting we take another trip, this time to Vancouver. We had such a great time. There's something so freeing about going to a new city with no plan in place and just being able to explore. Vancouver was having a record-breaking heat wave, which for them meant they were hitting 90 degrees. No big deal for us, but we didn't exactly bring appropriate attire for such weather. Luckily our hotel room did have a window AC and I remember having to leave my pills on top of the unit as the immunosuppressants needed to keep cool.</p><p>The one new medical change for me that summer was the introduction to Epogen. Yes, that's the same drug Lance Armstrong got busted for. One of the things the kidneys help out with is the production of red blood cells. This can lead to anemia if they're not working at full speed. Epogen helps boost those blood cells, but unfortunately is only available in injection form.</p><p>I would have to start giving myself injections. My dad did the first one so I could get used to the sensation. Unlike the pre-packaged Imitrex shots, these would have to be administered by old fashioned syringe. Knowing I would not always have a parent around for assistance I once again attempted to do it myself one afternoon.</p><p>My dad came home to a victorious child with about 12 different stab marks in her leg. It took me numerous tries to be able to puncture the skin enough for an injection. If the Imitrex shots were painful, the Epogen was agony. I found that being able to control the rate of the injection was a mixed blessing. Too fast hurt too much, but slow just dragged it out. Luckily after my blood count came back up I only had to return to the shots occasionally.</p><p>In the fall after returning to school, we decided I should change San Antonio doctors. Our confidence in my local nephrologist had been declining and the final straw was the mishandling of the biopsy diagnosis the previous spring. I can't remember where we got the recommendation for the folks at University Hospital, but in November of 1995, my mother flew in and once again we were attempting to navigate our way around a new hospital.</p><p>The nephrology unit at University, another teaching hospital, was located on the top floor of a building in northwest San Antonio. I can't remember the name of the doctor I met there, but my mom and I really liked him. He just seemed infinitely more invested in my history and treatment plan than my last doctor.</p><p>I only ended up seeing Doctor #1 for about a month when he left to take another job. Thus is the way of the teaching hospital. My next doctor was a red-headed man with glasses in his late 30s named Dr. Riley.</p><p>I was tentative and a bit miffed at first. We had gone through all of the trouble to switch doctors and then he just left? Though Dr. Riley was very kind, I questioned his experience. Over the next couple of years, however, he would prove himself resourceful and extremely competent.</p><p>During the fall of 1995, I would make a life-altering change of a different kind. I started dating Ryan. I won't go into it here as there is another entire post devoted to our relationship, but I was always amazed that he knew my entire medical history and wasn't spooked. Never was that more apparent than when I got sick in February of 1996.</p><p>Leslie and Erica were doing study abroad that semester, so I was back rooming with Shannon. She woke me up around 1am on a Friday morning because I'd been crying and whimpering in my sleep. I had felt fine when I'd gone to bed, but sometime during the night I'd developed a high fever.</p><p>Shannon whisked me over to University Hospital where their transplant patients got first priority and we were escorted to the treatment area immediately. I had a fever of 104. A nurse came in to ask questions and take vitals and then I was seen by an ER doc. As the doctor read my chart he noted that, "apparently the nurse thinks you go to <i>coll-age</i>" and because it was 3am, Shannon and I were both punchy and I had a disorienting fever, we thought that was the funniest thing we'd ever heard.</p><p>Shannon stayed with me until I got assigned a room upstairs and she had to leave to get ready for class. I hope I thanked her profusely for taking care of me because she may have actually saved my life. </p><p>Sometime mid-morning I managed to call my mom and Ryan. I don't know if Ryan was done with class for the day (I don't think he was) but he immediately drove down to the hospital. He was treated to watching me get an iv and having watch me get sick multiple times. My mom arrived Friday evening to help with Jamie-watch.</p><p>I had an infection which was doing a number on my system. This is always a concern when your immune system is suppressed. They started me on iv antibiotics, but then had to just wait it out for them to start working as my body struggled to fight off the foreign foe. Those three days were not fun for anyone present. </p><p>I was released from the hospital on Monday, but still had an iv taped to my arm. Three times that week I had an at-home nurse visit my dorm to administer more antibiotics. I'm sure she got lots of strange looks from my fellow dorm-mates on her way up to my room. </p><p>The infection was the last roadblock I would have for quite some time. I got to be a semi-normal <i>collage </i>student, have a serious boyfriend, and even have my own apartment with my friends in San Antonio that summer. Though I would always have to be monitored, it was nice to be able to focus on other aspects of my life for a while.</p><p>I'm pretty sure that weekend at the hospital bonded my mother and Ryan for life. It would be the first of many times these two would keep each other company while I was in the hospital. She was impressed by how maturely unphased yet concerned about the situation he was. He stayed the entire time, only leaving to sneak into my dorm room to sleep (Shannon was away for the weekend). It was reassuring to my parents and me to know we had help. We now had an ally in this fight.</p><p><br /></p><p><i>Next up: <a href="http://mcsteans.blogspot.com/2021/01/plasmapheresis-and-calculus-ii.html">Plasmapheresis and Calculus II</a></i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0tag:blogger.com,1999:blog-8450918409991661424.post-76872668801819477252021-01-17T16:49:00.006-06:002021-06-22T17:13:04.404-05:00Transplant One<p><i>Previously on The Diagnosis: <a href="http://mcsteans.blogspot.com/2021/01/master-list-for-diagnosis.html">Master List</a></i></p><p><br /></p><p>The freshman class of Trinity University had been instructed to arrive a few days before classes began for orientation. I had managed to gain sufficient weight and though my energy level was sub-par, I was deemed healthy enough to go off to college. So at the very tail end of August 1993, my parents and I loaded up the Sundance and one of their cars and we caravanned south to San Antonio. </p><p>I did not know anyone going into the semester, aside from a few stray science camp attendees that were not close friends. My roommate had been assigned by the university about a month ahead of time. Shannon had called me a few weeks before school started and we had a really great conversation. I filled her in on my medical woes and she wasn't phased in the slightest. I felt better about school already.</p><p>Our suitemate, Erica, was Shannon's best friend. They had opted not to room together so they could try and meet friends. I bonded with both of them instantly and they have been lifelong friends. They certainly made navigating college with a serious illness a whole lot easier. I'm sure it relaxed my parents knowing I would be rooming with competent people who cared about me. </p><p>Other students who didn't know my situation were less understanding. I got strange looks from students during an orientation event that required us to run around playing games on the football field when I got winded and had to sit down. Later on a geology field trip I opted out of a hike up Enchanted Rock and was on the receiving end of glares and whispers of, "why doesn't <i>she </i>have to go?" as they passed me leaving the bus.</p><p>My new doctor had an office not close to the university, so I had to quickly learn to navigate the route to his office. It sometimes baffles me trying to remember what it was like learning the streets of a new city without Google Maps, but we did somehow manage. My first visit to his office included a tour of the adjacent dialysis facility, just to show me what it was all about.</p><p>I remember the tour both calmed and alarmed me. Knowing specifics of a procedure often puts me more at ease, as if somehow I have more control over the situation. But the reality of seeing people in the chairs, knowing they would be there for hours with tubes stuck in their arms was frightening. I hoped at the time this would be in my far future.</p><p>School itself was quite an adjustment for me. I only signed up for twelve hours, since my stamina was not great. My friends good-naturedly nicknamed me "Sleepy" (we all had "Seven Dwarves" names) as I could frequently be found napping. </p><p>Health-wise I managed to make it through first semester pretty well with only one minor mishap.</p><p>About a month before leaving for college, I had a dermatologist appointment to address some rather large warts that had appeared on the back of my left hand. They were numerous and sizeable. Years later they would be understood to be linked to my kidney disease and eventually disappear on their own, but at the time the dermatologist decided the answer was liquid nitrogen and lots of it. </p><p>Freezing something small is not the most comfortable process, but numerous somethings the size of these warts was agonizing. It felt like it took 20 minutes, but it was probably closer to 3-5. By the time he had finished I didn't know whether I wanted to pass out or barf. The nurse recognized the woozy look on my face and brought me a Coke to sip. It didn't help. I made it to the front desk to check out, but then detoured on my way out of the office to the bathroom to throw up.</p><p>It didn't stop when I got home. I proceeded to get sick over and over again for the rest of the day and that evening found me in the ER. The next thing I remembered was waking up the next morning in a hospital room feeling much better. They had loaded me up with anti-nausea meds and morphine and I lost consciousness. I had just had my first migraine.</p><p>Sometime in October I joined my friends at a party just off of campus on a Saturday night. I was not a drinker and had only had maybe a couple of sips of beer that evening. The next morning I knew almost instantly I was dealing with migraine #2. Shannon and Erica very kindly escorted me to a nearby ER to get me some meds. </p><p>I was knocked out pretty much the whole rest of the day. People brought me food to nibble on. I had called my mom in the morning after returning to my dorm room and unbeknownst to me she had freaked out and called Dr. Wenzl, who's home number she somehow possessed. Eight o'clock at night I got a phone call from the man himself. </p><p>He asked me some basic medical questions, but it turned into more of a pep talk. This incident really threw me off of my game and I had started to wonder if I really could handle being sick while being at college. It felt like a coach restoring confidence in his players at half-time, but it totally worked. He assured me that I had done the right thing and told me I could contact him at any time if I needed to. I felt much better after that conversation and it just cemented Dr. Wenzl's place as the most compassionate doctor I would ever work with.</p><p>Having made it through the semester I came home for Christmas. Mom and I made the routine trek north to Children's Hospital for a check in with Dr. Wenzl. We did the usual blood-work first, then waited in his office. Though I had been excessively tired, I suspected nothing out of the ordinary and expected this to be a normal visit. </p><p>The blood-work was not good.</p><p>My creatinine had again risen to a concerning level. My kidneys had not completely failed, but they were headed that direction. Dr. Wenzl made the sobering proclamation that I should not return to school and asked if there was anyone in the family willing to be tested to be a transplant donor. This needed to happen ASAP.</p><p>Within the next week we were back in Oklahoma City with the whole family. My mother was not a candidate as she had a different blood type, but both my dad and Doug were B+ like me. Dad was taken to another room for his labs, but they left my mom and me in the room with Doug for his stick. </p><p>The first thing I noticed was the number of vials they had brought in. Surely some of those were for me, I thought. Nope. They stuck him and just kept. taking. vial after vial. The lab tech was trying to make cheery conversation and at some point I noticed Doug had checked out and was rapidly losing color. On the last vial he started sliding to the floor. </p><p>It was at this moment that I internally decided I didn't want Doug to have to go through this. I knew he would do it in a heartbeat, but that's a lot of trauma for someone who had inherited our dad's one-time needle phobia.</p><p>Luckily he didn't have to. The main indicator for the blood tests is an antigen match. I won't go into the science because even I don't understand it completely but it involves the body's immune response and the likelihood of a rejection. There are six antigens to examine, and the best possible situation would be a six out of six antigen match. A sibling would have the most likely chance of six for six, a parent most likely three for six. Both Doug and my dad came out at five out of six. Both excellent matches.</p><p>We went with my dad. Since he was older and wouldn't likely be able to donate in the future should I need another transplant, he got the green light. Also he really REALLY wanted to do it. Again, Doug would have stepped up to the plate in a second if asked and I've never forgotten that.</p><p>The transplant was scheduled for February 28. Among many other reasons a living donation is preferable, it gives you the opportunity to control all of the variables. Testing can be done ahead of time and it gives the patient time to get prepared. The healthier you are going into any kind of surgery the faster the recovery time becomes. Dr. Wenzl wanted me walking two miles a day every day.</p><p>My dad had to go up for testing beforehand to check the heartiness of his kidneys (how well will you be able to function with one kidney) and to actually see if he <i>had</i> two kidneys. That possibility had not actually occurred to me, but some folks are indeed only born with one. The human body is fascinating to me in this respect, and I was fortunate enough to need the one part that has a built-in spare.</p><p>Once his testing was done for the day my mom and I said goodnight and went to see a movie and spend the night at a motel. The next morning when we returned we discovered the night had been eventful. For dinner the previous day they had served fish, but didn't specify what kind of fish. This is an important detail as my dad is extremely allergic to catfish. </p><p>It was catfish.</p><p>He was sick sick sick all night. I felt terrible. He was doing all this testing for me and my mom and I were off obliviously taking in a movie and having a nice dinner. </p><p>The worst part of the pre-transplant time period was the combination of constant anxiety and boredom. All of my friends were at college, so I had no one to hang out with aside from my parents. I spent time helping out at their office part-time to get me out of the house. Read a lot of books, watched the winter Olympics, helped my mom cook. Anything to take my mind off of the impending surgery date.</p><p>The day before zero hour we once again checked into Children's Hospital. My dad and I shared a room that first night, but after surgery we would be separated for the remainder of our stay because I would be on high dose immunosuppressants. Also, I'm sure my dad would prefer to not moan in agony in front of his kid.</p><p>My dad was getting the short end of the invasiveness stick. These days they do the donation procedure laparoscopically, with the surgeon extracting the kidney through your front. Back then, they had to cut through the muscle in your side. For the recipient, there's no good reason to remove an existing kidney unless it's causing problems, so they place the new kidney in front of one of the old ones in the abdomen. Because I currently have two transplanted kidneys I have a total of four shriveled up unworking kidneys in my body. Were I to get another, they would have to remove one of the transplanted kidneys, but that's not happening and that is a story for another day.</p><p>Reinforcements had been called in to help post-surgery. My mom's aunt and uncle (he a retired doctor) flew in for moral support. My dad's sister was there to help take care of my dad. I still have the stuffed rabbit she brought me as a present.</p><p>The surgery was a success. After a year and a half of what had seemed like pitfall after pitfall, here was the light at the end of the tunnel. I don't remember the hospital stay, just that it was a lot easier than my last stint at Children's. Also, though there was certainly discomfort at the surgery site, I almost immediately felt better. The kidney was working.</p><p>I got frequent updates on my dad's wellbeing. I'm sure they spared me the details, but from what I gathered he was being his regular trooper self. He had scheduled two weeks off from work, though I'm sure he went back before it was advised. I'm pretty sure he went home before I did, but they had to monitor me for rejection and get my outpatient drug regimen sorted out.</p><p>Transplants are miraculous, but you <i>have</i> to take your medication. I would be taking two immunosuppressants and be going back on steroids (though on a <i>much</i> smaller and more manageable dose) to ensure that I would not reject my new friend.</p><p>Once home I felt better than I had in a very long time. I had energy, an appetite, and was no longer having to keep an eye on my fluid intake for fear of water retention. A month later, we finally moved into the finished home that had been under construction for the last year. It was beautiful and spacious. I remember standing on the second story deck, trying to stay out of the way while furniture was being placed inside.</p><p>It was a beautiful day, I felt great, and it was my birthday. Taking a deep breath and savoring the fresh air and pretty view of our new abode, I had a moment of appreciation for my health. I was full of joy and gratitude. I had turned nineteen years old that day. For the first time in a while, I was certain I would have many more birthdays to come.</p><p><br /></p><p><i>AN: This post is dedicated with much love to my dad, for giving me five healthy years with his gift, and a lifetime of support. </i></p><p><br /></p><p><i>Up next: <a href="http://mcsteans.blogspot.com/2021/01/college.html">Transplant life</a></i></p>mcsteanshttp://www.blogger.com/profile/13340293646440856741noreply@blogger.com0