Posts Tagged ‘stage 5 kidney disease

29
May
17

24 Days

24 Days to my Kidney Transplant Surgery!

itsamatch

Sorry for the radio silence, but there hasn’t been much to report besides the agonizing wait we’ve been enduring to find out if TK can be my donor during which my condition has continued to slowly deteriorate. Nevertheless, let’s recap what the last couple months have been like.

J and I attended that orientation for dialysis I mentioned when it started to seem like that would be a necessity. We spent a couple hours with a guy old enough to be my dad and a guy old enough to be his dad learning the basics of dialysis I had already taught myself from the internet. What we found out was the timelines for getting on dialysis didn’t really jive with our transplant plans — it takes several weeks to get all the shit together you need to do dialysis if it’s not an emergency. By the time I would have gotten dialysis sorted out, I would have had a new kidney. So, instead, I’ve been “toughing it out”. Seems like I dodged a bullet.

It’s been pretty difficult. Every time I start feeling extra bad I panic that I’ve hit the tipping point and worry I’m going to wind up back in the hospital for weeks. It’s completely insane that I’m still so high-functioning with the shape my body is in right now. All of my important labs have been hovering around the magical number 7, which is kinda funny, but also terrible considering these numbers aren’t supposed to be anywhere near each other.

My GFR, creatinine, and hemoglobin are all hovering around 7.

My GFR would be great if it was anywhere over 50.
Creatinine is supposed to be less than 1.
Hemoglobin should be over 11.

You can see how this is very bad.

Most people are forced onto dialysis with their creatine dips down to 8, they start dying without dialysis when it gets to 6. Most people have to get a blood transfusion when their hemoglobin is less than 10. Mine’s been less than 10 for six months, but a blood transfusion will complicate my transplant so instead I’m just kind of dizzy all the time. My left side constantly hurts, sometimes worse than other times. And I’m so, so tired. But besides that, I don’t feel too rough. A few weeks ago I was feeling really bad for a few days and it seemed like dialysis on the horizon for sure, but then we figured out we didn’t taper my calcium supplements when we tapered my steroids and I was just poisoning myself with calcium. I stopped taking that and felt a lot better. I’m on my last few days of steroids, finally. When I got down to 8mg I started feeling like myself again, mentally. Around 5mg I got my face back, almost. I can tell you that the side effects of chemo and steroids made me feel worse than this kidney failure is making me feel. Nothing’s making me feel as bad as the hypertension was making me feel.

I’m still working full-time, but that’s been getting harder. I haven’t been able to do a full week in the office in weeks, requiring at least one day working from home to rest. Luckily, my company continues to be really awesome and accommodating of that. I spend most of my weekends on the couch, resting, but I try to at least go out for breakfast or see friends when I’m feeling up to it. I’ve been watching a lot of tv.

TK had to go through a whole mess of unpleasantness to find out if she could give me her kidney. And we still have the entire major surgery and weeks of recovery to look forward to! I actually have a ton to look forward to, most of which is food, but also not being tired, dizzy, and in pain all the time. Also, whiskey. And did I mention food? I guess I’ll probably still be in pain for a while, it’ll just be different. And I’ll be allowed to take pain killers again because I’ll have a kidney that works. I’m trying not think too specifically about the actual surgery. J and I were talking about it for a few minutes last night and I nearly fainted, haha. This is one of very few situations where I don’t really want to know how something works or what’s going to happen, I just want it to be over.

Unfortunately, things won’t really be over once the transplant is done. Because an autoimmune disorder is what caused by kidney failure, I’ll still have chronic kidney disease and an autoimmune disorder. It’s possible the same thing that happened to my kidneys could happen to my new kidney. The best I can do is be kind to my kidney and try to catch it earlier this time. Because I’m getting a living donor kidney from a relative, the chances of rejection are lower and I should be able to get a good 15 years out of it, at least. Science, you have 15 years to master 3d printing kidneys–chop chop!

Here’s some weird photos of how things have developed. 

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14
Mar
17

More bad news I’m afraid: we find out a couple days ago that J can’t be my donor. Mom and TK are still in the process of getting tested, so hopefully we have better luck with one of them. Fingerscrossed!

In the meantime, my health is not in total freefall — my labs from last week came back and my estimated GFR popped back up to 11, phwew! Unfortunately, I still feel like shit more than I do not feel like shit lately and if I don’t find a kidney soon, dialysis is pretty much imminent. I had an appointment with Josh yesterday to check-in and go over options. We talked about my recent symptoms and everything’s pretty consistent with uremia due to kidney failure, I can only expect it to get worse as waste continues to build up in my body. The only thing I can really do is continue watching my diet and educate myself on dialysis so I know what I want to do if/when the time comes.

Josh referred me to a dialysis info session I have to go to, but he gave me a brief overview.

There’s two types of dialysis: hemodialysis and peritoneal dialysis.

Hemodialysis is what people traditionally think of — a catheter or fistula is hooked up and blood is removed and filtered through a machine before it’s returned to my body. I got a taste of this while I was in the hospital, as the plasma aphaeresis treatments I was getting were a very similar process. I would have to do this every other day or so at a special facility and it would take about 4 hours. That’s a pretty substantial chunk of my week.

Peritoneal dialysis is, as Josh has described it, “underutilized”. It involves hooking up a tube into my abdomen through which fluid can be added and removed. This fluid flushes my abdominal cavity and removes wastes from my blood by using the lining of my abdomen as a filter. This can either be done a few times a day, or with the help of a machine, every night while I sleep at home. This puts a lot of responsibility on me to stick to a schedule and keep my tube site super clean and figure out how much fluid I’m supposed to use, but it lets me have a more flexible schedule and normalish life. It also does the job my kidneys should be doing every day again, so I should feel better more often and I’ll be able to eat potassium again. Josh really tried to sell me on this peritoneal dialysis and he did a good job, but I still need to obsessively google everything so I can make an informed decision.

Ideally, I’d still like to find a kidney and avoid dialysis entirely. But Josh said it’s important I don’t let myself get completely rundown before starting dialysis, and I just don’t have that many kidney donors in the testing pipeline right now, so better to get my ducks in a row before it’s an emergency.

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If you’re healthy and you’d like to give me your kidney, please read this post.

In other news, I don’t have to take the antibiotics I’ve been on for 3 months anymore and we’re going to continue tapering down my steroids! A mg a week until I’m down to 5mg. Very exciting!




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