Transplant question

[KICKSTART]

10years ago i was diagnosed with FSGS , totally out of the blue. No prior kidney troubles, not even ill ! The only explanation i was given was that my bodys own anti-bodies attacked my kidneys. Has this happened to anyone else? The reason im asking is ..have you had a transplant? Im very concerned that if i consider it (yes i know after 10yrs im not even on the list!) what will my chances be? I mean rejection is one of the major things isnt it , so if my body attacked my own kidneys , what will it do to a donor one ? I just wondered if anyone had the same circumstances and had a transplant that worked ?

[Brightsky69]

Well....my brother get tested to be a donor for me and they said my anti-bodies ddidn't match him so it was a no go. Antibodies suck!! I was told that I would have to find someone who had the same antibodies as me to get a decent transplant.

[RichardMEL]

KS I believe the statr is around 30-50% of FSGS patients can have it reoccur with a transplanted kidney. You should ask your neph about your particular situation and what they think the chances are. I have a very slow moving form of FSGS and the doc basically said even if it attacks a transplanted kidney there's every reason to believe it would act just as slowly and thus it's likely the kidney would fail for other reasons before the FSGS got it. Your mileage may well vary though.

Re your body attacking the kidney- remember the prime function of half the poist-transplant meds are imune suppression - as in to stop the body attcking the "foreign" body.. thus I don't think you'd have to worry about your particular antibodies more than anyone else getting a transplant since once you get a kidney your body is ALWAYS trying to off it... but the meds cut down the response.

Just my two cents anyway. Talk through your concerns with your neph.

Also note you've been on dialysis for over 5 years (I think) - when you get on the list that time should count for you. It certainly does down here - so you wouldn't be starting out "fresh" as it were at 0 time.

[Brightsky69]

I was wondering....back when my transplant was working like clockwork I had to take a tone of immune supressive drugs. Now that my transplant has crapped out all I take is prednisone. I am not having any rejection issues. So why the heck did I have to take those drugs in the first place? Is it because my transplant is such a close match that I am not having any issues? Or just because it's not working anymore that my body isn't trying to reject it? Knock on wood...I am not complaining.

[Jill D.]

Kickstart - I was diagnosed with FSGS in 1990 when I was 28 years old. I have never heard that explanation given (your body's antibodies attacking your kidneys) for the cause of FSGS. For the most part, the medical community doesn't know what causes the disease although with some people there is a genetic connection. There is an organization that is doing research on FSGS and nephrotic syndrome called NephCure - they are researching the cause and a cure. You can check them out at www.nephcure.org
I had a positive crossmatch transplant 3 years ago and have been in chronic rejection since about 6 months post transplant - the cause is call "transplant Glomeralopathy" - which means I am getting scarring again. I have had several biopsies of this kidney and they tell me that there is no sign of the FSGS recurring even though the FSGS caused scarring on my native kidneys.
I have always been curious if there is a link between FSGS and high PRA.
Just like you, I was diagnosed out of the blue - my symptoms were protein in my urine (which I wouldn't have known if I hadn't been pregnant at the time) and high BP as my pregnancy progressed. My kidney function stayed stable until 2002, and I was evaluated for a transplant in 2003. I started
dialysis in April 2006 and my transplant was in Dec 2006.
Check out NephCure Foundation - if you register as a member they will keep you updated on clinical trials, latest research, fundraisers, educational events, etc.

[KICKSTART]

Thanks everyone for your replies.
Jill D i will check out that web site, thanks .

RM , I have always thought my chances were around 50/50 and i think thats why i have never taken the step !  I still dont know if im brave enough , but i hate hemo sooooooo much , if i was still on PD tbh i dont even think i would have considered a transplant as i plodded along quite happily! Im really not sure if my 6 years !!! of dialysis will count , but thats easy enough to find out.
Hows this for luck ..there is a guy lives round the corner from me , went to our unit , though i never met him. He did dialysis for 6 weeks then got a transplant (not a living donor) but a perfect match and hes been great ever since !
Oh and ive made an appt , not with the work- up team , but with a member who can tell me from start to finish whats involved ! So maybe i am dipping my toe in the water?

[RichardMEL]

Jill - your story is almost exactly the same as mine. I was only diagnosed during a routine medical when I started my first full time job in 1993. They found protein in the urine. I said "so what?" (wrong response!!  ) and it went from there, but they think I had the FSGS since I was a toddler and had heaps of operations on my eyes. They think maybe I got a UTI or something that wasn't noticed or treated and that caused it... but there's a whole lot of thinking and not a lot of KNOWING so it's all guesswork. Incidently I have a PRA of 0% at this point, so not sure what that has to do with anything.

KS I'm like you - I hate hemo... I am willing to take the chance given that 93% of transplants survive at least one year, and 50% get to 5+ years (those our our stats anyway) - I'd be willing to take that chance to get a few years(or more!) of "normality" away from the dreaded machine... and in those years who knows what advances could be made that could make life easier if/when I needed to return to the horrid world of dialysis. Everyone's different though - good luck!

[RightSide]

10years ago i was diagnosed with FSGS , totally out of the blue. No prior kidney troubles, not even ill ! The only explanation i was given was that my bodys own anti-bodies attacked my kidneys. Has this happened to anyone else? The reason im asking is ..have you had a transplant? Im very concerned that if i consider it (yes i know after 10yrs im not even on the list!) what will my chances be? I mean rejection is one of the major things isnt it , so if my body attacked my own kidneys , what will it do to a donor one ?

Yeah, my situation is similar.

My kidney biopsy showed I had primary FSGS, cause unknown.

It's not necessarily "antibodies," but it's some kind of auto-immune attack on the kidneys.  And you're right, patients with FSGS have had transplanted kidneys fail relatively quickly.

I'm listed for a transplant--but my transplant neph told me I had to be "realistic" about how much mileage I can expect to get out of the transplanted kidney before it fails too.  I don't care.  Even two good years is still two more years than I would live on hemodialysis.

My renal disease was already advanced by the time I was diagnosed, so I don't know how rapidly the FSGS was progressing prior to that.  But it seems to be progressing very slowly since; it's been 16 months since I started dialysis, and yet my kidneys are still producing plenty of urine.   And my pre-creatinine is still hovering around 4.0.  So I'm keeping my fingers crossed.

BTW, if the transplanted kidney fails, and then you get a second transplanted kidney, it is likely to fail VERY fast; often within a matter of weeks.

[pamster42000]

My daughter was diagnoised with MPGN type 2 after having strep throat. Her own immune system attacked her kidneys also. Her first transplanted kidney lasted five years and the second about a year and a half.

[MooseMom]

Kickstart, I've had fsgs for 18 years and am now facing dialysis.  I have already had my pre-transplant evaluation and I am currently doing all of the testing required.  If it was certain that fsgs would attack your new kidney, they wouldn't bother looking for a kidney for you in the first place.  The surgeon told me that yes, there is a chance of recurrence but the chance is smaller if you were diagnosed as an adult and if it took a long time for you to reach ESRD.  After transplantation, as a matter of course, they put you through plasmapheresis, and they can repeat that procedure as often as they deem necessary and/or effective.  There is also a new-ish drug called Rituximab (not sure of the spelling) that has proven to help in some cases of recurrence.

It never hurts to explore your options.