fsgs and transplant

[jessie17]

Hi im new to i hate dialysis and i think its great! so far iv found loads of helpful info. Anyways this is my story i was diagnosed with nephrotic syndrome at 19 however i believe i had this illness since childhood as looking back i did get colds etc regular and i fainted had fits as a child (i dont no if this is a link) i also would have had times were i felt bloated but of course otherwise i and everyone else thought i was fine as i looked and mostly felt totally healthy - this is a silent disease. Anyway at 19 i ballooned up with fluid i new something wasnt rite 2 biopsies showed up minimal change but a third showed fsgs. All usual drugs failed to have any effect but left me with some horriable side effects. Since i was leeking so much protein and due to this was severly malnurished the docs thought kidney removal was best option for me so last oct i had both kidneys removed iv been on dialysis now 2 and half years now. The docs reckon transplant best option for me as i have acess difficulties for dialysis due to poor veins i am on my 2nd line now as they just cant get a fistula formed on me.  I am terrified to be honest of the prospect of transplant of course i would love to get a kidney but the thought of going through the fsgs again well its scary!! i no reoccurrance is very high especially in aggressive case like mine but i feel like im in such a dilemma as longterm dialysis will cause probs for me due to acess and well at 26 i dont want to think the rest of my life will be on dialysis either! im willing to give transplant ago if a kidney comes up iv decided this is best for me to wait on list because i couldnt take a kidney of a loved one for it to fail the risk is to high also i think them knowing this hasnt made them jump at the idea of giving up a kidney either. I would love to hear if anyone had successful transplant with fsgs and am i being delusional  thinking iv a chance with transplant. I guess im living in hope at end of day it all we got.

[MooseMom]

Yes, there are members of IHD with fsgs who have had successful transplants.  I myself have it but have not yet started dialysis, and I am on the waiting list.  Mine is not as aggressive, but the fact that doctors know that yours IS aggressive will help them to begin making battle plans.

I don't have much time right now, but later I will post a link to an article that illustrates how the circulating blood element that causes fsgs has just been discovered!  It is called suPAR, and this discovery makes transplant surgeons very hopeful that fsgs after transplant can be eliminated through plasmapheresis or other blood filtering process.  There is a LOT of hope in this regard.  If you google "suPAR Nature Magazine", maybe you will find the article, or you can go to the Renal Fellow Network's site and find it there.  I will try to come back later with some links if someone else has not done so by then.

[jessie17]

Thankyou so much moosemum i think iv spoke to u before at inspire . im away to check out that article now thanks again for replying x

[MooseMom]

Oh, I thought I recognized you!  LOL!

Here is a link to a blog posting at The Kidney Doctor that talks about this new discovery.

http://www.thekidneydoctor.org/2011/09/commentary-focal-segmental.html

[RichardMEL]

I have FSGS. My transplant is just over a year old.

The risk, as I understand it, of FSGS reoccuring in the transplant kidney is 35-40%.

Having said that, I have the "slow" form of the disease - like you i had it, most likely, since my childhood (I was not diagnosed till age 22). I discussed the concern about the transplant and FSGS affecting the transplanted kidney. The general feeling was that even if I was one of those 40%, it would still most likely be the slow form, and thus potentially take decades to do real damage to the kidney (I have had 2 biopsies so far and no mention has been made as to evidence of FSGS). The general thought thus - from both the docs and me - was that it was worth it to go ahead since even if FSGS did attack it was more likely that the tx would fail due to other reasons before FSGS became a real concern.

Of course ths is all so nebulous and given my particular run with "that shouldn't have happened" stuff happening it actually wouldn't surprise me if something else happened - but even if the tx died out tomorrow due to FSGS it's been worth it to be free of D for over a year.

Everyone's mileage will of course vay. That's just my two cents.

[jessie17]

Thankyou for replying richard, it great to hear from others that understand. Like you i do think i have to give transplant ago, anytime of dialysis will be a bonus. Has your transplanted kidney been doing well without any treatments such as plasma exchange?

[RichardMEL]

no plasma exchanges or any other special treatments. A small concern about rejection a couple of times, with biopsies confirming there was nothing to worry about, but a year in it seems reasonably stable (of course I just had labs taken and always worry about what the result will be....). So far so good though as far as I know.

[jessie17]

Thats brill both positive and hopeful, il have my fingers crossed for you that things keep going good. what kind of dosage of meds did the doc put you on after you got your transplant, was the dosage of steroids high i hate that drug with a passion!! Thanks again

[RightSide]

I have slow FSGS.

I got my transplant last January--26 January 2011 to be exact.  So I'm coming up on my one-year anniversary of the transplant surgery.

So far, the kidney is working well.

[RichardMEL]

Hello folks!

I had an interesting conversation on this topic, with this thread in mind, but also for me when I was in clinic yesterday. I happened to get the number 2 guy in the renal dept who really knows his stuff - so since I had a top neph to talk to and not an intern I posed the question.

What he told me was actually surprising to me.

He said that FSGS per se is not a kidney bourne disease (I had asked if having my FSGS riddled original kidneys may be a factor in possible infection of the tx kidney). He said that, while the medical fraternity do not exactly know, it is believed to be a factor in the blood (!) and the scaring part of the FSGS is more a symptom, rather than a cause. He also said that in some situations the blood factor can leave the body totally - and this accounts for the widely distributed idea that the chances of FSGS attacking a tx kidney is around 35-40% - so in 6 or so out of 10 cases, that blood factor is gone by the time a tx comes around.

I found that very very interesting.

I also asked him if there had been any signs of FSGS in the biopsies of my kidney I'd had since transplant and he looked it up and so far.. nada!

He also said that, as time passes, the chances are less and less that FSGS would attack the new kidney since if that blood factor was there to cause it, chances are it would have done so by now.

So that's also encouraging for me.

Certainly something to think about for anyone contemplating transplant. Unfortunately though so far they have no way to test for this "blood factor" since they don't know exactly what it is. It would be awesome to be able to test for of course prior to transplant....

maybe in the (near) future.....

oh btw re the steroids - no on a pretty standard dose I think. Started on 20mg and apart from a bit of a sidetrack of 1000mg shots when my eye went bad, i'm now down at 5mg....

[MooseMom]

Actually, Richard, they DO now know what this circulating blood element is...it is suPAR.

http://www.thekidneydoctor.org/2011/09/commentary-focal-segmental.html

http://renalfellow.blogspot.com/2011/08/supar-breakthrough-in-fsgs.html

Isn't this fantastic news!!???  This is a very recent discovery, and it is transplant patients with fsgs who will probably benefit first/most.  It would be great if a treatment could be created for fsgs patients not yet on dialysis.  There's still hope!

[RichardMEL]

WOW! I need to tell that neph when I see him next. Thanks for that info !!

progress! Awesome!

[jessie17]

Hey guys jus popping by to say hi, yea richard my neph also told me that fsgs is due to a circulating factor in the blood he was at a conference in america recently and it was very much about that he also told me that scientists are studing fsgs in great detail at the mo and that there is every reason to be hopeful!  moosemum also gave me that info she is very well informed our wee researcher   rightside thats great abot your transplant may the good times roll 

[cath-hater]

Actually, Richard, they DO now know what this circulating blood element is...it is suPAR.

http://www.thekidneydoctor.org/2011/09/commentary-focal-segmental.html

http://renalfellow.blogspot.com/2011/08/supar-breakthrough-in-fsgs.html

Isn't this fantastic news!!???  This is a very recent discovery, and it is transplant patients with fsgs who will probably benefit first/most.  It would be great if a treatment could be created for fsgs patients not yet on dialysis.  There's still hope!

I have FSGS and had a transplant done 2010. FSGS reoccurred almost immediately.  Went through 3 months of plasmapheresis but still no help. I Googled this "supar" thing and looks like it's still very new.  The only treatment still for re-occurance is still plasmapheresis.  You'd think after 3 months (3 days a week) of plasma treatment, this elusive supar thing that was swimming around in my blood would have been taken care of.