FSGS

[nuttyroo]

I’ve been doing plasmapheris for my transplant and was wondering if anyone else is in a similar situation?

[SaraEads]

I had FSGS. I received my transplant in 2003 and, thus far, I’m happy to say that it is performing its function well. Good luck. I was diagnosed with a 50% loss of function in 1980. There has been so much progress in treating kidney issues since then.

[nuttyroo in reply to SaraEads]

So after your transplant you went into remission?

[SaraEads in reply to nuttyroo]

The transplanted kidney did not develop FSGS although I was told at the time of transplantation that there was a small chance that could happen. My creatinine today runs between .8-1.0. By the time I got the transplant my native kidneys were not functioning at all. Due to the FSGS they were completely scarred over. I was completely dependent on peritoneal dialysis.

[maximina in reply to SaraEads]

Hello my 35 year old son was diagnosed with FSGS 5 years ago. He is presently on PD Dialysis and on the UNO's list waiting for a kidney transplant. I understand that when you get a transplant your native kidneys are not removed. Our concern is that FSGS may develop on the transplanted kidney. Have a lot of faith and great hopes, but we have that concern. Thank you for all your postings they are very helpful.

[Hidden]

After my first transplant in 2008, I was good for seven and a half years until my FSGS returned and I had to go back on PD. Luckily, I got a second transplant this year in March and they are watching closely for signs of recurrences of FSGS and then they will treat me with plasmapheris and other medications like orenzia which is experimental at this time. There are options that make recurrences highly treatable.☺

[WYOAnne NKF Ambassador]

I too was diagnosed with FSGS in 1990. I received a transplant from a cadaver in 1999. I am now 18 years post transplant. My native kidneys are the size of golf balls - all scarred up & no longer function. My creatinine also remains at 0.8 - 1.0. Everything is working well.

[Bert64]

I had plasmapheris after my second transplant, how's it working for you is this your first transplant.....where was your transplant done?

[Ckdchild41]

What is FSGS would like to know more about it

[nuttyroo]

I have had my transplant for five years now and it’s always been a struggle. The fsgs came back as soon as I got my new kidney. I have been doing plasmapheris since then. It started with 3x a week for 3 months then tapered down slowly but still doing it once a week. I’m very discouraged but anything is better than dialysis.

I’m curious as to where everyone here had their transplant and treatments. I had my transplant at Columbia university hospital in Manhattan and have been treated at Winthrop hospital in Long Island NY. I currently live in Florida for the past four months.

[anne627 in reply to nuttyroo]

I had my transplant 23 years ago at Columbia Pres. University. Hospital. I spend the winter in Fl. Which hospital are you treated at in Fl.?

[nuttyroo in reply to anne627]

Boca regional. I can’t say it’s the best. Where do you go?

[anne627]

I go only to CPMC in NY. I get blood tests every 3 months while I am here in Delray. Boca Regional isn’t a transplant center. I don’t have a nephrologist here. When I am in NJ I only go to NY. My first transplant 24 years ago failed and I had a hospital infection going to a local hospital. I am afraid to not go to a doctor in anon-transplant hospital.

I wish you luck with your nice and health.

[Kimmy930]

I also went through Plasmaphoresis before my transplant. I had my transplant March of 2009 and I'm doing fine. My son and I were close but not an exact match but his kidney is doing very well thanks to having this done the week before.

[nuttyroo]

I think I’m the only person who has not had great success. I’m still doing plasma, have a catheter in my chest and now the drs want to do a bypass from a vein in my leg to make a fistula in my arm. 😒