Showing posts from 2021

Change Is Good?

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. 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. 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. But about a month passed and we heard no more of this nonsense. Perhaps they

Transplant Two

Previously on The Diagnosis 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. 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.  Second order of business while we were waiting for lab results was a dialysis treatment for me. As I mentioned in Transplant One , the healthier you are goi

The New Normal

Previously on The Diagnosis 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.  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

Matters of the Heart

Previously on The Diagnosis 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. 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.  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

Dialysis One

Previously on The Diagnosis: Master List 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 started dialysis in September of 1999. Tha

How long can you go without dialysis?

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. 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.  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. 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


Previously on The Diagnosis: Master List of Posts 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? But I'm getting ahead of myself, so let's back up. After graduation I moved an hour up the road to Austin.  Austin! None of these buildings were there in 1998. 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 transport

Vaccine Fail

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.  I made it through the virtual paperwork and got in their system. The schedule showed no available appointments, which was not a surprise.  As I was setting aside my laptop to go upstairs for my post-dialysis nap, my phone dinged with a text.  We have appointments available, please check now! Oh boy! Maybe someone cancelled. I quickly hopped back online to secure my spot. There were an awful lot of spinning icons and then, "sorry our page is being bombarded please try again." Over and over I went through the process, mindlessly pressing buttons until EUREKA!  There was a spot at 11:00-11:30 that morning, 15 minutes from my house. I snatched it up. Furiously I ran upstairs to throw on real p

Plasmapheresis and Calculus II

Previously on The Diagnosis: Master List of Chapters 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.  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. 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. Dr. Riley had IDEAS. First o

Master List for The Diagnosis

Links to all entries of The Diagnosis: 1.  The Diagnosis 2.  The Side Effects of Elective Surgery 3.  Transplant One 4.  College 5. Plasmapheresis and Calculus II 6. Austin 7. Dialysis One 8. Matters of the Heart 9. The New Normal 10. Transplant Two 11. The Dot-Com Bubble 12. Phoenix 13. What the Hell Is a Sed Rate? 14. Phoenix Pheresis Phunzone 15a. Migraines 15b. Some additional thoughts on Migraines 16. Dialysis Two 17. Transplant Three? 18. Matters of the Heart, the Second Part


Previously on The Diagnosis: Master List 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. 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. 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