With FSGS, how long have I got?

[RightSide]

My ESRD was diagnosed as FSGS. 

When I applied for a cadaver transplant, the transplant team's neph told me to "be realistic" (never good news from a doctor) about how long my transplant would last before FSGS claimed it too.

Anybody here with FSGS?  How long did your transplant last before it started to fail too?

[Cordelia]

What is FSGS?     

[RightSide]

FSGS = Focal Segmental Glomerulosclerosis.

The healthy functioning tissue in the kidney is gradually replaced with useless non-functional scar tissue.  It's suspected to be caused by some chronic inflammation that attacks kidney tissue.  Thus it will attack a transplant too--eventually.

[paris]

Rightside,  I also have FSGS.  My transplant was 9/10.  I had a biopsy at 2 weeks and they could already see FSGS in the new kidney.  But, we knew all along that was a risk.  My numbers almost 10 months post, are good.  1.8 creatinine and most other numbers are in the normal range.  I feel great.   So, I refuse to worry about it.  I'll take all the time I can get with this kidney and am grateful for each day.   It took years for it to take over my native kidneys so I'm hoping it is slow growing this time too.   

RichardMel has FSGS and his transplant is newer than mine.  He hasn't mentioned any signs of FSGS (unless I missed that info!)   

My docs aren't alarmist, just realist.  I would rather know that be surprised.    I'll be thinking of you   

[Cordelia]

Thanks for explaining. My thoughts are with you   

[MooseMom]

I'm not aware that recurrent FSGS is a given.  It is not destined to happen to a new kidney.  Sure, there's a risk, but it is not written in stone.

[rsudock]

What a crappy disease FSGS....I hope there are some new treatments that can help slow the progression to the new kidney. Thinking of you Rightside and all who deal with this!

xo,
R

[RichardMEL]

FSGS sucks that's for sure.

Paris, you know I haven't asked if either of my two biopsies showed FSGS signs (and I am not certain if they would tell me if it did??? Maybe I SHOULD ask next clinic if I remember). In a way I'm not sure I want to know, because then I'd be asking myself the same questions.

All I know is that I asked prior to transplant what the chances were of FSGS attacking the donated kidney (if it be live or otherwise). I was told around 30-40% chance that it could occur.

So I asked "If it did attack the transplant how long till it could kill it off" - and the doc said "well we can't be sure of course because every case is different, but you have a slow moving form of FSGS that took YEARS to take you to ESRD with your existing kidneys - so it's reasonable to assume that it would work at a similar rate with any transplanted kidney" - the idea being that it probably would be more likely (in my case anyway) that the tx would fail for other reasons than FSGS.

Now of course who knows? These hideous diseases have no rhyme and reason, and really it's just guesswork on the docs part. At the end of the day I see that there's not much I can do about it one way or another. So if they tell me at some point it's there and causng trouble, well just have to treat it as best one can (control BP basically-which we're doing anyway) and hope it's slow. it's not like taking tomatoes and peas out of my diet would help or something, so i try to not focus on stuff I can't control and worry about it when it happens. i figure the stress of worrying about what if's probably do my transplant less good anyway from raising BP and anxiety levels. Maybe some would think I'm in denial... I don't think so - I'm well aware of the chances, and what could be happening - I'm not sitting here thinking "it won't happen to me! I'll be in that 60%!" - I just try to focus on things I can control and what's happening now.

I know that doesn't really help RS (or Paris, or anyone else).. but that's just my view.

[Deanne]

My impression is that it depends on how aggressive your case of FSGS was in the first place. I have a slowly progressive form of FSGS. Because of it's slow progression, my neph and the transplant neph aren't concerned about recurrance.

[RichardMEL]

My impression is that it depends on how aggressive your case of FSGS was in the first place. I have a slowly progressive form of FSGS. Because of it's slow progression, my neph and the transplant neph aren't concerned about recurrance.

yep, exactly the same thought process for me. You put it so much better

[RightSide]

That's the problem.  I don't know how long I had CKD.  Because I wasn't diagnosed until I had already reached stage IV CKD.

So I don't know how long the process took.  I'm willing to guess that from stage I to stage IV took a number of years though.