My sister wants to give me a kidney - warning - long!

[Deanne]

I don't know what to say. It's an emotional roller coaster.

My sister is in Minnesota. I'm in Oregon. I imagine if she's approved as a donor, she'd have to come here. Even without the travel to consider, it's complicated.

My sister had a hysterectomy a month ago and during the surgery, her surgeon damaged a ureter. She had a second surgery two weeks ago to attach an external tube from the affected kidney to an external pee bag. The original plan for her damaged ureter was to wait for two months while she heals, then repair the ureter. Her Dr told her donation is still a possibility and if she's going to donate within the next few months, there's no point in reattaching the ureter.

However, I'm not listed yet. My transplant evaulation is June 15-16. I assume I'll be accepted, but I know there are no guarantees. I'm otherwise healthy and fit (low BMI, exercise fairly regularly, no bad habits, etc). My function just slipped below 20% in January and so far my kidney disease has been slowly progressing so it could be several months before I'd be ready for a transplant... or it could be tomorrow. Who knows. In the meantime, my sister is dragging an external pee bag around. That has to be miserable!

An additional complication is that my nephew (son of the sister who wants to donate) was also diagnosed with FSGS. My sister said she's not going to hang onto her "spare" kidney for her son's sake because it's likely that he won't need it for another 40 years and by then she'll be too old to donate to him. That's probably true - I was diagnosed when I was 9 years old and will be 48 in a couple of weeks. However, my sister also told me she has her head in the sand about him, so I worry that if his disease starts to progress more rapidly, she'll be angry at herself later.

My neph also told me my siblings might be ruled out as donors because of the genetic factor. She said she's read studies that showed higher disease recurrance from a sibling transplant where a genetic form of FSGS was in play. At the same time, it did take me over 40 years to progress to ESRD, so if the disease recurrs at the same rate, I'd be in my 90's before it'd be a problem.

I guess I'll just lay it all out for the transplant coordinator. Regardless, it's a mind-blowing experience to have the offer.

[Sax-O-Trix]

Is your sister a match?

[Deanne]

No idea if she's a match yet. The transplant center won't talk to her until I complete my evaluation. They did at least call me back to tell me that even if she's a match, they can't guarantee they'd even take the kidney attached to the damaged ureter. I think my sister needs to deal with the reconstructive surgery and then we'll see what happens after that.

[willowtreewren]

Oh, hugs to you, for sure. 

The transplant ride really has its ups and downs. 

Thinking of you.

Aleta

[monrein]

Deanne, no matter what happens in the end, the fact that your sister wants to donate to you even with all those complications is a gift to be appreciated.   

[jbeany]

 

I agree with Monrein - in this case, it really is a gift where it's the thought that counts! 

Besides, you can always do what I did - go on the regular wait list, and tell your sis that you aren't saying no, but you plan to see how you do on the regular list and keep her kidney "in reserve."  (My sister didn't have health issues, but she did have a small child.  I wasn't willing to risk my nephew's mom, even though I was fine with taking my sister's kidney, if you see what I mean.)

[Deanne]

I told my sister that whatever happens, her offer alone is incredible and I can never thank her enough just for that. She replied that she has it, I need it, so of course she'll give it to me. Then she said (jokingly) that she would expect lots of presents and stuff. 

I'd do the same for any of my siblings, so I understand where she's coming from, but it's still pretty darn awesome.

[malaka]

New here, so I'll try to be brief.  My membranous nephritis has gone from GFR 60 to 20 in less than two years despite drug therapy.  Regarding family transplantation, I'm unsure as unless medical science knows (and not just guesses) the cause of the disease, I have no assurance that my kids or sibs won't develop it. Because of that alone, I am reluctant to consider any of them as donors. 

Your sister is probably home free, but with her son I'm thinking genetics is involved in the etiology of kidney disease more than we're told.  "Idiopathic" means unknown cause, and for purposes of scientific proof, I can accept that.  But I'd like to know the odds of familial predispositon.

[Deanne]

Hi Malaka - welcome! Please post an introduction in the Introduction section.

In our case, FSGS is considered hereditary. My family all sent blood samples off to participate in a study after my nephew was diagnosed. I haven't heard if the study is ongoing or what they came up with, but as soon as my nephew was diagnosed, we all knew it was hereditary. I don't think my siblings need to worry since they all reached middle-age without being diagnosed with it.

I'm sorry you had such a quick progression from 60 to 20. I've been very fortunate. I was diagnosed with kidney disease when I was 9 years old. I'll be 48 in a couple of weeks and still at about 20% function.