FSGS - Successful, long lasting transplant?

[danielleblock]

Hello! My name is Danielle and I am a 31 year old woman in Seattle,WA. I was diagnosed with CKD in 2005 (2 years after IBD diagnosis). Latest biopsy suggested FSGS. My GFR is 25 and I will be referred to a transplant program at 20. Anyone out there had a successful, long lasting transplant with FSGS? worried about recurrence.

[Dotti55]

Both my brother and I suffer from FSGS and his transplant has lasted over ten years. I just got mine 2 mos. ago. I think it’s inevitable that it will eventually come back, you still have FSGS. But usually it takes quite a while before it does. Good luck.

[WYOAnne NKF Ambassador]

Hi Danielle! I also was diagnosed with FSGS and had my kidney transplant in 1999. So, that makes 18 years of a successful transplant from a cadaver. My creatinine has been steady at 0.8 - 0.9. No recurrence of the FSGS in my new kidney.

[SaraEads]

I was diagnosed with FSGS in 1980 via an open kidney biopsy and at that time had lost 50% of my kidney function. For some reason (???I went on a semi-vegetarian, low protein diet???) it took until 2000 for my GFR to be at 8. After 6 years on the transplant wait list, I received a transplant in 2003. I am now almost 15 years along and am almost 77 years old with a creatinine that runs between 0.7 and 0.9. To this point there has been no recurrence of the FSGS, though I worried about this just as you are. Be encouraged as I have never met in the transplant community a transplant FSGS patient who has had a recurrence, though I am told it happens.

[Dotti55 in reply to SaraEads]

That’s really excellent that so many haven’t had a recurrence! That makes me really hopeful I might not have to do this again!!!

[danielleblock]

Thank you all!! It is encouraging to hear success stories 😊 have a blessed Christmas!

[Hidden]

I was diagnosed in 1993 with FSGS and had a very slow progression until 2007 when I was put on the waiting list. I got a transplant in 2008 and my brother was the donor. I was good for 7 and 1/2 years when I had a recurrence of FSGS. I went back on dialysis a short while later and received a kidney transplant nine months ago and I feel great. There are treatments for FSGS that are much more effective than when I got my first transplant. Having FSGS is no excuse for not pursuing transplant options because I had 7 and 1/2 years of feeling much better and now 9 months of feeling great and I wouldn't trade that for anything. Go for the transplant, it's worth it!