FSGS and Transplant Outcome

[renalpenguin]

I hate it when two people tell me two different things!!!!!!!!!!!!! 

I have bad FSGS- over the past 2 years my protein loss has ranged from 5-20 grams a day! Anyway, my kidneys are slowing down and I've been referred to a transplant team. My doctor acts like I have a very small chance (if any chance) of FSGS coming back in the transplanted kidney- so I was hoping he was right. But now I've met my transplant team (and so far, I'm impressed) and they say with the fact that my case is incredibly aggressive, there is a fairly good chance I relapse. Does anyone have experience with this?

 

[paris]

I also have FSGS.  I have been told that it could reaccure in the transplanted kidney, but the % is very small. I have talked with three different transplant centers, one being Johns Hopkisn, and they all say go for the transplant.   The more I have learned the past couple of years, the more confident I am that the chance is slim of the new kidney being effected and it is worth the try.  Go through the evaluations and get on the list. At least you will be accummulating time while you continue to research and make yoiu decision.  Good luck!

[RichardMEL]

I'm afraid what I have to say will only muddy the waters a bit more.

I too have FSGS, but mercifully I have the slow (chronic) form that's taken a very long time to kill my kidneys. I asked the neph about this about a year ago with the thought towards transplant. He said something like 30-40% of transplanted kidneys will have FSGS re-occur (I am almost certain that is the number he gave me) but he then went on to tell me that should that happen to me, given I have the slow form of FSGS that even if it did re-occur to me, the chances are it would go just as slowly in a transplanted kidney, and it's more likely I'd lose the kidney from something else like rejection than to FSGS. In essence he pretty much dismissed it as a concern for me with transplant.

With an agressive form it would be a concern I am sure.. however there's a chance that it may NOT re-occur and it is something only you can decide(I guess) in terms of taking the chances. Not a situation I envy. I'm sorry. 

[girliekick]

what i was told was similar to what richard has said.
I DO NOT have fsgs, my cause was unknown, & my tx doc thought it was a likely cause, so we talked about the what ifs he said they would likely b able to tell post tx, and if fsgs was the cause we would prob do post tx, D for a lil while. I did no follow up on this, but may u can ask ur tx, team.
Gluck
girl

[RightSide]

My nephs were never sure what caused my kidneys to fail--only mild proteinuria--but the biopsy showed evidence of slow FSGS.

The transplantation neph at Mass General told me that there was a decent chance that FSGS would re-occur in the transplanted kidney, and that I need to be "realistic" (her word) about my prospects with transplantation.  I told her that I've already been "realistic" about my prospects on hemodialysis, and so any years I can live with a transplanted kidney is a bonus.  She agreed--and I ended up on the transplant wait list.

[RichardMEL]

RS did the transplant doc agree with the idea that even if the FSGS re-occurs in a transplanted kidney that because you have the slow form of the disease the chances were that it would also be slow in a transplanted kidney? This is what I was told, and I got 13 years post diagnosis out of mine, and I imagine I'd get more if I was doing appropriate treatment (ie: ACE inhibitor BP drugs, etc) from day 1. I'm actually not that worried about FSGS & transplant as I figure something else will cause it to fail before the FSGS at that rate....

[RightSide]

RichardMEL,

First, my apologies for not replying to you sooner.  I stopped browsing this section for some reason.

No, my transplant doc didn't make any specific predictions like that.  I just gathered from her use of phrases like "You have to be realistic" that I shouldn't be surprised if the transplanted kidney fails sooner rather than later.

When a physician tells you "You have to be realistic," it's usually not hopeful news.

[renalpenguin]

I'm not sure what to do...

My cousin got tested to be my donor and is about a 1/3 match (they don't take any better than that for FSGS at the hospital I'm at). He's been accepted. I don't know what to do; I didn't even know he was going through the process until they said he's accepted. A 1/3 match means I will be on prednisone for life, and I don't know if I'm really up to that. Don't get me wrong, I'm VERY appreciative of what my cousin wants to do for me! I just don't want him to have to sacrifice something for me if it's unlikely to make a difference in how I feel- I get every side effect of prednisone until I drop below 5 mg, and I'll be on 10-20 for life. The chances of FSGS coming back for me are huge as well.

I guess my question is what exactly is better about a transplant over dialysis? Is it worth for me to try this (in my situation- I realize in most cases, the transplant would be a yes!)

[paris]

I have talked to transplant surgeons at three different centers; one being Johns Hopkins.  Every one agrees that there are no quarentees, but when asked what they would do, they all answered "transplant".   It is a personal choice and some chose not to.  I also have FSGS.  I am not sure what you mean by "they don't take any better than 1/3 match at your center".  My son is a 5/6 antigen match, which would be a great match for me (except for my antibody situation).   I know I would go for it.  Three years or 10 years --- any time would be a gift.  We all know that a transplant doesn't last forever, but  I would take any time given to me.   

Congratualtions on having a match!!  You are fortunate.   You have a huge decision ahead.  Let us know what you decide.   

[renalpenguin]

I don't know what 1/3 means either- that's what they tell me though! I know my dad is a perfect match, but they're afraid the FSGS will come back if I get his kidney.

[RichardMEL]

rp - my question to you is - do you have the acute or chronic form of FSGS? I think this makes a huge difference.

For me, I have the chronic form, and it killed my kidneys fairly slowly (I was diagnosed in 1993, and they think it had been active since the early 70's when I was very young) and did not require D until 2006, so let's say 30odd years for it to kill my kidneys off. I figure in the case of a transplant, and there's say a 40-50% chance of FSGS coming back, the chances are that even if it does, it will be just as slow moving, so for me the transplant question isn't relevant since the high probability for me is that the kidney would be killed off by rejection or some other problem long before FSGS would be a worry.

However everyone's situation is very different, and I can understand specially if someone had the more acute form of FSGS that the expected life of a transplanted kidney could be relatively small, and thus the "cost benefit" of a transplant would be much more even.

I too am confused by the "1/3" thing - Certainly my docs have never suggested anything about having FSGS and any particular limit on a donor. My sister is a 2/6 match and they were happy to take her bar for a blood pressure issue.

I think at the end of the day you need to weigh up the potential pros of a transplant (freedom from dialysis, feeling better, less restrictions, etc) vs. the "cost" of it (how long it will give you, steroid issues, compromised imune system, etc) - and something you probably need to have a serious discussion with the neph about.

The other thing to keep in mind is that medical science is ever improving, and that there is some hope that better outcomes may be achieved down the track.

[Quickfeet]

Primary or Secondary FSGS? Primary FSGS is more likely to come back than Secondary FSGS.

[renalpenguin]

Here's an update- dialysis is really taking its toll on me... so I've decided to give this transplant a try. My wonderful cousin is very understanding that this terrible disease could come back, but he says he doesn't care- to him, he says, it's worth a try (which I'm so thankful for!) even if the kidney lasts minutes.

[Beth35]

I'm so glad you are going for it.  Any time you have to be free from dialysis is worth it in my opinion.  I have IGA neph.  and I had my transplant for eleven years before they saw my kidneys declining.  Those eleven years have been wonderful.  I was able to adopt two wonderful kids and do a lot of stuff free from dialysis.  It sucks having to do it all over again but I will do it and appreciate any time I get off of dialysis. 

Good luck!

[renalpenguin]

Well, on June 22, I gave it a try- at first the FSGS came back, and we thought it would be very aggressive. My doctor was very discouraged (although he wisely didn't show it) and ordered intense plasmapheresis for me, starting on the 23rd. My family prayed hard that night and we sent prayer requests all over the Internet- the next morning (before plasmapheresis) my urine protein was almost negative. I had five plasmapheresis treatments "just to be safe" and a week later only have a trace of protein in my urine (which is a miracle for someone who's "good" used to be 10 grams of protein or more!) I was expecting to be on plasmapheresis for at least eight weeks, but my dr. cancelled it for now and said if the protein goes up we'll do a treatment or two, but probably won't need to often!

So basically what I'm saying to all the people with FSGS- I was REALLY doubtful about doing this, but my awesome cousin was willing, and I felt it was the right thing to do. So I tried it, even though my chances were terrible, and so far it has been a success, even though I've had some crazy complications (none related to FSGS). Even with a really aggressive case, I am in remission for now. I guess my advice is, no matter how bad your case, it seems like the aggressiveness of the case doesn't play a part in relapse (we expected a terrible relapse; I only had a minor relapse which went into remission after a week) I know my disease could come back later, but it seems plasmapheresis (and prayers!) works.

I'm hoping everyone with FSGS will be cured someday! I hope this was able to help someone doubtful like I was! I'll be praying for every FSGS patient- hang in there guys! We'll beat this junk!

By the way, I know I probably spelled plasmapheresis wrong- sorry about that!

[RichardMEL]

Thanks for sharing rp! I will definitely keep this in mind whenever my turn comes and IF the FSGS seems to want to make an encore performance. Fingers crossed this has nipped it in the bud for you!!

Enjoy that transplant!!! 

[MooseMom]

Your spelling is impeccable, and your story is inspiring.  I have fsgs, and I can relate to your posts.  I am trying to get on the list, and reoccurence of fsgs in the new kidney has always been a concern for me.  I am absolutely thrilled to read that your transplant has so far been a smashing success!  Congratulations!