I had a living donor transplant in 98 and the FSGS came right back into the new kidney within months. I was told that because of the re-occurenece it was likely to happen again if I recieved another transplant. This makes me not want another transplant but I dont want to be on dialysis forever. I am 29 and have had FSGS since I was 12. It has been a long a stressful road. Does anyone know anything else about this.
I have been told by one of my nephs, that it may take several transplants to work and that there is no way to know which one will. He said it was a 30% chance of it recurring, unless you have already been down that road, then that percentage goes up, but you can be re-transplanted for as long as you are a candidate!
My other neph said it is a 50/50 thing and that if it did come back, it would be like it was before...concerning slow or fast progression.
So, who knows! I would love those answers too, because they are pushing hard for the transplant on me, but like you, I don't want the emotional roller coaster of several transplants or the hope of any of them working. There are some people that it works for the first time. Sigh...it is hard to know what to do with this disease. If I were you and you are still a candidate, I would keep going for it....any time off dialysis would be worth it.
Sorry to hear about the FSGS recurrence. My 18 yr old daughter had her first transplant 15 mos. ago and like you, the FSGS returned within weeks. She had 6 wks of plasmapheresis prior to transplant to prevent rejection and possibly FSGS recurrence. Since the recurrence, she has had a series of Rituximab, Solumedrol pulses, plasmapheresis and earlier this year Cytoxan with Solumedrol combined and continuous plasmapheresis. Her albumin is now around 4, which is good, and she's finally now around 1.0 protein/creatinine ratio. The doctors have told us that the plasmapheresis will eventually wear out the disease and the timing is different for each individual. She has started weaning off the plasmapheresis therapy and will soon reduce her 7.5mg daily prednisone dosage. It's been encouraging thus far, at least enough for her to go away to college.
Does your doctor propose any treatments to prevent the recurrence? Did you have your native kidneys removed? I think it's worth taking a chance for a better quality of life. Have you been on dialysis for 10 yrs? There's much improved therapies fighting this disease, but no cure yet. I wish you the best.
I had a transplant in 2003 and within 8 months was back on dialysis due to recurrence of FSGS. During that time I was treated with several rounds of plasmaphersis which did not seem to help much. One year later I another transplant (2005) which was followed by plasmaphersis 2 times a week then after a few months it was lowered down to once a week. The treatments seemed to keep the FSGS at bay but about 16 months post-transplant my urine protein levels and creatinine were starting to creep up again. We stopped the treatments and within a month I was on dialysis again.
I have been told after transplant #1 there is a 50/50 chance of recurrence and if it does happen than after transplant #2 it goes up 75/25 and higher and higher each time.
I am only 26 and was diagnosed at age 17. I am in the same place where I don't want to be on dialysis forever but am scared to have another transplant. I have talked with my doctors about starting Rituximab. This seems to be the most promising drug out there.
I hope things go well for you. Please let me know if there any more of my experiences you are interested in.
The transplant coordinator from Indiana University called me yesterday and I asked her some questions concerning this post, so I wanted to include her answers. I asked how many fsgs transplants that they have done...she said they have a lot of experience with the disease and have done more than she could recall off of the top of her head. My next question was, how many of those trasnplants were successful, as in no recurrence? She said lots of them and more than not. She said it all depends on how the disease originally progressed and that sometimes they have people do dialysis for a while before transplant, in order to wear the disease out, and that seems to help a lot with recurrance.
I have an appt. up there in a few weeks, so I plan on asking more questions....what do you different than anywhere else to get those kind of results? etc. If anyone has any questions that I could ask while I am there, pertaining to recurrance, please post them before Oct. 10.
I had already 4 kidney transplants since I stared in dialysis 1983. Believe me another transplant is better than dialysis. I have my last transplant in May 10, 1995 and Thanks God is working. The FSGS is still in my new kidney but is controlled with the medicine that I am taking for the trasplant that is Prograph. The protein in the urine is coming down using Coozar. The first transplant was in 1985 and last for 2 months, then I rejected. In 1986, I had a kidney transplant that I rejected after 5 days of the transplant . In 1987, my older brother gave one of his kidney that I rejected after 3.5 years. The last kidney transplant was from cadaver and working very well.
When I started with my problem I was 22 years old, single, junior year in college. Now, I am 46 years old, married with a wonderful wife. We have three children, the first one Brian, 14, and two girls Brenda, 11, and Karen,9.
I was in dialysis for many years and recently I found out what caused my kidney failure. The doctor explained me the the FSGS is in the bone marrow and attack the kidneys little by little.
My advice is to trust in God and be patience. I prayed everyday for my last kidney and after 12 years of kidneys and dialysis, finally I can give thanks to God for this one that let me return to my normal life.
Thanks for the information. My doctor is great but he dosent know a lot about reoccurence. My disease was diagnosed in 92 when I was 12 and from that point progressed quite slowly. I didnt have to go for my transplant until 98. In that time I tried just about every drug course available as well as plasmapheresis. The disease returned about 6 weeks after transplant and again progressed slowly. I have only been on dialysis about 6 years. I thought that there was a test out there that could tell you if you have a certain factor that made you prone to reoccurence. My doc dosent know. Good luck with your appt.
Wow! That concerns me, i have never heard anyone say that the FSGS is in the bone marrow? What exactly did your doctor say? I mean if that is the case is a bone marrow transplant curing?
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