LR no D according to my neph

[Deanne]

I saw my neph yesterday. My kidney function is at about 21% and she said she'll refer me to the transplant center to start the workup process when I drop below 20%. She asked about the possibility of a living related donor. When I said my nephew also has FSGS, she said none of my siblings will likely be considered as donors because studies have shown that this means the chance for recurrance if any of their kidneys is used is high. I wasn't counting on any of them to be a donor anyway, so it wasn't upsetting news, just interesting. My brother was already ruled out because he has cancer, one sister is the mother of my nephew with FSGS and I figured she might want to "save" her kidney in case he needs it someday, and my older sister just doesn't seem like a good candidate, although I know she'd probably want to be considered.

[MooseMom]

Why does your sister not seem to be a good candidate (other than the obvious fsgs thing)?  Is there some sort of genetic testing that can be done to see if any of your relatives would be suitable, ie, not contribute to a high chance of recurrance?

I know a cadaveric kidney is not the best solution for everyone, but in your case, it just may be.  Testing for living donors is a time consuming process, and who knows?  You may get a cadaveric kidney before they can find a suitable living donor for you.  Anything can happen!

[kellyt]

Living donors can come from the oddest of places.  Anyone who says they are willing to donate give them your coordinators number and let the cards fall where they may.  Just my  .  I didn't even think my sis-in-law liked me and now she is a huge part of me...literally.   

Also, you could stay at or around 20% for a long time (I did), so hang in there.  I hope you stay at 21% for years and years.   

[okarol]

Get the work up done when possible and begin accruing time, because the wait is long in most areas.
Yes, you can stay at 21% for a while, but no one can predict how long.
I agree, you never know when you may have a living donor in your future.
When you meet people say "Hi nice to meet ya, what blood type are you?"  J/K, but don't be afraid to share your story.
I hope you feel ok and stay stable as long as you can! 

[Deanne]

Thanks for the encouragement.

My older sister has bipolor disorder, so I never wanted to consider her as a potential donor. Although I think she'd want to be considered, I'm glad to be able to play the bad genetics card to eliminate her because of the possible mental/emotional issues it could cause for her. She's in her 50s and is only just figuring out how to not call for help from my parents when she gets into a bind. She's a very responsible person, but taking her out of her normal routines for small things (holidays, visits, etc) makes her a bit hyper. Testing, travel to donate (I'm in Oregon, my family is in Minnesota), and then surgery itself..... I don't even want to imagine it! 

I know genetic studies are underway to identify the bad gene, but I don't know if it's been located yet. My family participated a couple of years ago by sending off blood samples for the study, so for now, I think the answer to "is there a genetic test for my relatives" is "no" for now. Maybe the answer will change by the time I need one. What's meant to be, will be.

I'm going to start the workup process as soon as my neph refers me. I'll find out my blood type with my next round of labwork. My neph said if I'm an "A," it's ok to hold off a little longer, but otherwise she'll refer me as soon as my creatinne hits 3.0 (It's 2.91 now). With the trend I'm showing, I suspect I'll start the workup process within a year.

It's all made me think about how there are some people I just wouldn't want to donate to me. Maybe I'll think differently later. I have an acquaintance who is always very helpful (too helpful? or maybe I'm too sensitive to such things) and I wouldn't want a kidney from her because I feel some boundary issues from her and I think I'd feel like I was imprisoned by her helpfulness. I don't know if that makes any sense.