Posts Tagged ‘renal disease

26
Feb
17

Kidney Wanted

Finally had my Kidney Transplant Evaluation this week!

I have been evaluated and found deserving of a donor kidney! Hooray!

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No real surprise there, as the ongoing theme continues to be I am in perfect health, besides my mysteriously failing kidneys. They’ll run some tests just to make sure, again, but looks promising. It also sounds like, barring complications, my recovery time is likely to be about half or less than what is usually projected.

As expected, it was mostly bureaucratic hoops. We didn’t really learn any new information, as it was mostly geared towards people who don’t read pamphlets or use the internet. We “watched a video” which was actually a narrated power point presentation containing identical information as a packet I received and memorized three months ago. We spent more time in waiting rooms than talking to medical professionals, as usual. We spoke with another nephrologist, who ran a basic physical on me; and a social worker, who asked me a bunch of questions I could easily lie about, but didn’t. The whole thing kind of felt like starting a job at Target. You take a questionnaire with a bunch of extremely obvious behavioral questions and you watch a safety video about the dangers of wrapping a power cord around a ladder during a flood or something.

ANYWAY, that’s over with and now I’m officially on the UNOS list and eligible to receive a donor kidney!

I have type O blood, which is the rarest recipient type — I can only receive another type O kidney.

The current wait time for a type O kidney in the Bay Area is 6 years.

I am already in Stage 5 end-stage renal disease (ESRD) according to my numbers; GFR is holding steady at about 13, and my creatinine continues to slowly climb–it’s at about 4.5 now. It’s been months since I was hospitalized and they’re still not getting any better. Without a new kidney, it’s only a matter of time before I start showing symptoms and need dialysis to live. By all accounts, being on dialysis is terrible. Plus it reduces my life expectancy significantly and makes it more complicated to get a transplant. Time is of the essence! Luckily! I have a lot of caring people volunteering to give me their kidney. Even if we don’t share the same blood type, or aren’t a good match due to antibodies, a viable donor could still help me get a kidney through paired donation.

My transplant nephrologist has made it known to everyone in the transplant program that “we should be moving faster than we normally would”, and that announcement has already been effective. We were told my sister would have to resubmit the questionnaire she filled out months ago before she could start her lab work up and that there would be a totally arbitrary bureaucratic two-week waiting period before she was even called back to schedule that. We were waiting for me to get my usual lab work done when I received a call telling me Jess wouldn’t be waiting after all and could go ahead and get her labs done that day. Later that day, they called my mother and sent her the lab order to get hers done as well. Things are happening!

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Once a match is found, we could be scheduling surgery inside of six weeks. Jess and I suspect the thing we’ll end up waiting on is insurance.

If you would like to give me your kidney, please read this informative post and start by filling out this questionnaire. You will need my full name and birthdate — please message me privately if you have any questions.

In other news, I’ve mostly bounced back from that hemoglobin dip I saw a couple weeks ago that tanked my energy for a few days — it’s back up to 9. Apparently, 8.5 is about my cutoff for feeling like shit. Thanks anemia! Still not sure what caused it, but I’m still hoping to solve it with some adjustments to my diet. I’ve also bounced back from that mishap with my BP meds that happened around the same time. I no longer feel like ALL OF MY BONES ARE COMING APART, which is great. Also! My BP has been around 125/80 which is super normal! Hopefully it holds. My steroid dosage is down to 15mg now (from 60mg when I left the hospital) and I’m having a lot less side effects, so that’s substantially improved my quality of life. Insomnia isn’t really an issue anymore and my mood feels more stable overall most of the time. My mostly-vegan, low-sodium diet continues to be the best for managing my fluid retention, so Sausage D isn’t much of an issue anymore, even with the added fluids from chemo every month. I’m in pretty good shape. Hopefully, as we continue to taper down my steroids, my face will go back to normal and if I can keep my hemoglobin up I won’t be so tired. I’m still in near-constant pain on my left side, which concerns me, but doesn’t seem to be concerning anyone else. Sounds like so long as I’m not vomiting again, fainting, or peeing blood, I’m “fine”.




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