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. 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
I had hoped to include the next development in my medical history here, but hadn't realized how much 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!
Next up: Matters of the heart