Posts Tagged ‘kidney donation

16
Jun
17

7 Days

MY KIDNEY TRANSPLANT IS ONE WEEK FROM TODAY AHHHHHHHHHHH!

So crazy. Am I anxious? Yes. But mostly anxious-excited. I’m not really allowing myself to think about the stuff that’ll make me anxious-worried. It’s been a little challenging — usually, the way I cope with stressful situations and stay so level-headed is by processing potential outcomes in advance so that I’m prepared. Unfortunately, this situation is a little more high-stakes than usual and I’m trying to avoid freaking myself out. Also, I feel very strongly that I should not put any negativity around this into the universe right now, which is why I will not list my concerns out loud. Superstitious? Maybe, but I’ve seen it work the other way where I put a positive idea into the universe and it happens, so let’s not chance it.

ANYWAY I’m super looking forward to my terrifying major surgery next Friday, and so is my sister!

I’m also trying not to fall into a trap where I think about how after the surgery everything will be “back to normal”. This is not the case — I’ll still have chronic kidney disease, and I’ll still have the very mysterious autoimmune issue that caused the kidney disease. I’ll be on immunosuppression meds probably forever. I might have to stay on hypertension meds because of the immunosuppression meds. But! I probably won’t be puffs anymore, my back won’t constantly hurt, and I’ll be able to eat whatever I want without tasting unfiltered waste in my mouth anymore! I shouldn’t be extremely anemic much longer, which means I won’t get dizzy sitting down and be constantly on the verge of fainting. I’ll have enough energy to work five days a week and go out on the weekends, eventually. It’s exciting stuff. I get to LIVE!

I don’t really have a sense of how long my recovery is going to take. All the available information is for people over 65 and I am absolutely a spring chicken. By the numbers I should have been on dialysis weeks ago, so nothing typical here. I’m crossing my fingers for about two weeks, because that would work out best with my current work situation, but even I think that’s maybe delusional optimism. But I’m basically completely functional without kidneys, so… we’ll see.

I’ll let you guys know how it goes. 

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!

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”.

17
Dec
16

Kidney Donor Info

Read these first and think carefully if this is something you really want to do:

Kidney Donation Info

Top 10 Questions Prospective Kidney Donors Have
All expenses for the medical work-up and transplant surgery are covered by my health insurance, but not additional expenses, such as travel, or lost wages if sick time/disability from work is not available.

Kidney Donation After-Care Overview
2-3 days in the hospital, Vicodin, and limited activity for 4-6 weeks!
Risk of having a life-threatening problem with donating a kidney is 1 in 3,000.
The risk of minor complications such as a minor wound infection is about 2-4%.

It’s major surgery! They remove part of your body! Anything can happen!

If you’re still interested, fill out this health questionnaire and find out if you are a viable donor:

Health History Questionnaire
A living kidney donor is usually between ages 18 to 55.
A history of heart disease, chronic lung or liver disease, kidney disease, hypertension, diabetes, cancer or untreated psychiatric disease usually rules someone out. Smoking, obesity, and other health issues are considered on an individual basis.

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Paired Kidney Donation

In the event that you really want to give me your kidney, but we are not a good match, there is another option. You could be a good match for someone else who needs a kidney, who has a donor who is a good match for me, so we could swap donors and both get kidneys! Functioning kidneys for everyone!




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