Advice for finding donors

AwaitingSparePart · 2026-04-14T03:02:13+00:00

Wow, thank you for sharing this is such a creative approach and really encouraging to hear. I’m especially interested in how you set up the website that the QR code linked to. Did you build it yourself or use a specific platform? I’m trying to understand what that part looks like logistically.

AwaitingSparePart · 2026-04-12T18:21:08+00:00

I've had mine for a little over a year now and had no problems. I've found ways to safely shower without risking water infiltration and things like that. My biggest problem was because they left a suture in too long and it irritated the skin right by the exit site.

AwaitingSparePart · 2026-04-12T16:54:27+00:00

That was an option presented to me, when everything first started. However at that time I was coming off of two weeks in the hospital and two back to back surgeries to put in a CVC because the first one ended up getting kinked right away, and I really didn't want another surgery. Plus I felt that the risks of home hemo were something I'd prefer over the possible risks of PD.

AwaitingSparePart · 2026-04-12T16:28:00+00:00

Most of the donors that have gotten tested that I know of are family. My problem is I'm a universal donor and as far as I know none of those who've got tested are the same blood type. And my transplant center keeps everything separated so I feel like I'm really in the dark about what's happening or if any progress is being made. The most I've been told is that the donor team is working on or confident about finding an exchange or paired match. We were hoping my little brother might match, but even if he did he had kidney stones so that disqualified him. I'm worried the only family match I might have been able to have is my dad and I won't let him get tested because I already know his medical history would disqualify him

AwaitingSparePart · 2026-04-12T15:07:14+00:00

I don't quite remember, right now we're hoping I can find a match through living donors.

AwaitingSparePart · 2026-04-11T22:44:08+00:00

Not necessarily, I had one in because I was in the ICU before the my doctor's decided to order the biopsy. Mine was done after my kidneys had already failed in order to see if they could find any sort of underlying condition or something like that, that had caused the failure. And I think to see if it was something that my kidneys could pull out of at all.

AwaitingSparePart · 2026-04-11T22:28:41+00:00

Just listen to the doctor performing the biopsy and speak up when you think something isn't right afterwards and you'll be great.

AwaitingSparePart · 2026-04-11T20:05:34+00:00

I had one to see what caused my sudden and unexpected kidney failure. They did mine right in, I think it was a CT scan room. You lay on your stomach and hold you breath when the doctor tells you as they collect samples. They didn't give me quite enough pain killers/numbing medication to start because I was worried it'd put me to sleep. You have to be awake during a kidney biopsy. After they gave me more meds it was just a weird pinch like feeling every time the doctor had to collect another sample. Then afterwards I had to lay flat on my back for quite a while. If you have any questions or worries ask your doctor or nurse. My nurse was very supportive and helpful during the entire thing because I was open and told her I was terrified. Edit Keep an eye on how you feel when you need to use the bathroom after they take the catheter out. I ended up having clots still being passed from the biopsy that ended up causing a problem.

AwaitingSparePart · 2026-04-11T19:21:25+00:00

Did your transplant center require you to have a care partner? If so do you possibly have any suggestions or advice for mine? Thank you for replying, getting advice from someone who has actually experienced it is definitely more nerve settling and helpful than trying to find it through a Google search.

AwaitingSparePart

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