Matters of the Heart, the Second Part
*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.
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.
Ok, McSteans, but what's going on with your heart?
....¯\_(ツ)_/¯
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.
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.
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.
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.
So let's give them a name.
The heart problems:
Ischemic Cardiomyopathy, or the heart's decreased ability to pump blood brought on by a weakened heart muscle.Clotting disorder, which has been previously discussed.
Coronary Artery Disease, yikes. This can mainly be found in my left descending artery resulting in sluggish blood flow.
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.
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.
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.
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.
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.
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.
Dr. Levy was quite distressed. He had me schedule a series of tests that would determine our next step.
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.
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.
Our only path of treatment would be to continue a regimen of oral medications for therapy.
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.
Apparently with my heart it was not so easy. They had to shock it again to get it back to normal.
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.
I swirled it around in my brain for a long time. Did I really want another 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.
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.
Every year I would go in for an echocardiogram. No biggie.
Every other year, or any year in which the Echo gave a borderline result, would necessitate the stress test.
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.
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.
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.
The agenda goes something like this:
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.
STEP TWO: Have dye injected into the IV and lie in a CT Scan so they can observe your heart pre-test.
STEP THREE: Go back to the waiting room for an hour.
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.
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.
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.
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."
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.
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.
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.
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?
I would want him to get the damn defibrillator.
I got the damn defibrillator. Mine is a slightly more modern version than the traditional chest ICD and is called a S-ICD. 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.
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.
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.
Also I've been told I don't have to do the stress tests anymore, so. Huzzah!
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Next up: Lady Business
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