anyone have transplant before start of dialysis?

• By princessjacobson
• Posted January 20, 2008 at 2:13 pm

I am currently awaiting a transplant and I am not on dialysis. I am at 17% kidney function. My neph. said that I could only have a living donor transplant since I have FSGS. I couldn't wait for a cad. kidney because of my FSGS. My best friend got tested and we are waiting her Pet scan. If it is clean then they will schedule the surgery. A living donor transplant usually takes about 6 months for all the workup and such after they determine they are a match. A cad. kidney is about 5 to 7 year wait because not alot of people sign up for organ donation and there are alot of people waiting before you.
Hope this helps.
Jennifer

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• By Maxi
• Posted January 20, 2008 at 9:10 pm

I too had my sister's kidney and they started at 20% function, when you get to 10% they wan't you to go on dialysis. By the time the testisng and stuff was done, I ended up doing 6 mos of hemodialysis before my transplant. It is best with a living donor, however you can obtain a cadavar also. The wait just depends on your location and the match. If you get a perfect match, all 6 antigens, they will fly it accross the coundtry for you. My transplant lasted 2 years total. The disease returned and attacked my transplanted kidney within the firsts month. I am now on a waiting list at Presby in Pittsburgh and have actually refused one before that I was called 3 times from Allegheny General and refused them becauses I wasn't ready to do that again after the disappointment of losing my sister's kidney. I am now ready to try again and a call could come anytime. I wish you lots of luck with your transplant and know that the donor considers it the ultimate gift they can give.

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• By peetoteeto
• Posted January 21, 2008 at 8:05 am

My experience is similar to Maxi's. My kidney function slowly declined over eight years. At 20%, the doctors put me on the list and prepared me for a transplant.

Things took longer than I had hoped, and I was on in-patient hemodialysis for five months before the transplant. In that time frame, my wife was approved as a candidate for a transplant. I received her kidney in June of 2006. My FSGS has not returned, and my kidney function is currently stable.

My best to you both as you seek new options. A transplant indeed is the ultimate gift, no matter how long the gift lasts for any of us.

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• By Maxi
• Posted January 21, 2008 at 10:38 pm

Hi Peetoteeto. You are very lucky to have had 8 years. Mine took 3 years to decline, then the FSGS came back within one month in the transplanted kidney. The doctor's say that it is probable that it will come back in another transplant, which is why I have waited 4 years to finally decide to try again. They have mentioned Plasma transfer, but I'm not doing that. They said the protocol will be the same cyclosporine and prednisone, gengraf.

I was curious to what your medicines are and if you do anything special. Also how many antigens did you match with your wife? I would not do another living donor transplant because of the risk and I kinda felt guilty about losing my sister's kidney the first time.

I am so happy to hear of your success and wish you the very best. It is indeed a gift.

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• By peetoteeto
• Posted January 24, 2008 at 11:22 am

I think I have a slower form of FSGS, which may mean it won't return to the functioning kidney. I worry more about general kidney failure, having had one small episode of rejection six months after transplant.

I'm on two immuno drugs: Neoral and a study drug, Certican. Oh, and 5mg of Prednisone, some blood pressure meds, and zocor (neoral increases cholesterol, I guess).

I don't do anything special or out-of-the-ordinary. I watch my sodium intake b/c of the high blood pressure. I exercise some.

Who knows what the future holds. I'm eternally thankful for my wife's gift and that it's lasted this long. I'm truly sorry that you had only short-term success with your sister's gift, but as you know that doesn't diminish her gift, or her love. Best to you as well.

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• By Livefortoday
• Posted October 4, 2008 at 11:46 am

Hi, I was diagnosed with fsgs and treated for 5 years before my transplant given to me by my friend Pat. We transplanted when I was about 20% fuction so I never had to do dialysis! I was so grateful to my nephrologist to be able to pre-empt dialysis. Everything went well until I was hit with the BK virus (only happens in 3-5% of kidney patients) It has been a long road of surgery and treatment but I have a creatinine of 1.7 and just recently had 2 negative BK tests so we are stopping the treatment. I live one day at a time and am so grateful that I am feeling well and enjoying life right now. So far we have not seen evidence of fsgs. I try not to think about that! I am currently on 18 rx's some of them rx vitamins. I am hopeful this kidney will last for many years.

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• By luv2cook
• Posted October 9, 2008 at 8:55 am

Hey there, I was diagnosed with FSGS in 92 at the age of 12. In 98 I finally was at low enough kidney function that I was told transplant or dialysis. SInce my mom was a match we went straight for the transplant. FSGS is a persistent little *&@#$* and came right back to my new kidney. It took almost another 4-5 years after that for it to progress enough to need dialysis. I am nervous about a transplant because I honestly feel better now on dialysis (that I do at home, myself) then I felt after my transplant and I was told that chances are, FSGS will come again. I have tried a lot of treatments in my 16 years battling FSGS so any questions you have please feel free to ask.

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