DIAGNOSED WITH FSGS WAITING FOR A KIDNEY TRANSPLANT

[maximina]

My 36 year old son has FSGS, he was diagnosed 7 years ago. Received treatment of Rituxan and Cyclosporin, both treatments did not help. He is presently on PD but developed 2 hernias and needs surgery so he was put on hemodialysis. His journey has been difficult. Waiting on a Kidney and registered with UNOS. My question is if anyone out there has had a transplant with the same condition (FSGS) I understand that there is a 50% recurrence. Thank you!

[ArsenalFan]

7 years post 7/29. Had FSGS. One Hernia I thought was manageable but 2 weeks after popped out again ER doctor needed to push back in for me. Had hernia fixed same day time they removed the catheter. No issues back to work in 90 days could been sooner but was in no hurry.

[maximina in reply to ArsenalFan]

Thank you so much it is very encouraging. Presently, my son was on PD and has developed two hernias will have surgery this Friday. Has a jugular catheter right now for hemodialysis. Just in case I forgot to mention that his FSGS is PRIMARY (IDIOPATHIC/UNKNOWN CAUSE)

[WYOAnne NKF Ambassador]

Yes I was diagnosed with FSGS back in 1992. I had a transplant from a 16 year old deceased donor in 1999. So, yes it has been 20+ years. My creatinine is stable at 0.8 - 0.9. My native kidneys continue to shrink, in fact they couldn't even see my right on an ultrasound. Since my function is normal, after 20 years there is no sign of FSGS in my transplant.

When I had my transplant I was told that FSGS could effect my transplant kidney too. I have a good life and no sign of FSGS.

Yes it is a possibility, but I would certainly not think IT IS going to happen. Live LIfe after your transplant and don't worry about it!

[maximina in reply to WYOAnne]

How encouraging your report. I failed to inform that he has Primary FSGS (Idiopathic). We were told that once he gets the transplant they would do plasmapheresis as a prevention. 20+ years what a blessing. I really appreciate your information. We trust that everything will work out for him. Like I said it has been a bumpy road, and he is going through so much right now. We just hope and pray that there is a kidney out there for him. Thank you for taking the time to write. Blessings to you and may God keep you healthy.

[WYOAnne NKF Ambassador in reply to maximina]

The doctor's figured my FSGS came from strep I had when I was 9 and several months later was in hospital with glomerulus nephritis. 30 years later I was in kidney failure. In 1999 I don't think they even did plasmapheresis.

Blessings to you and your son too!

[waghappy in reply to WYOAnne]

Wow fantastic. I have FSGS was diagnosed last year, but probably had it a while. I do want a transplant and you are so encouraging. There is always hope.

[sidmoesr]

I was diagnosed with FSGS back in 2005. It slowly progressed over the years so I got on a transplant list and received my transplant in 2017. I started on PD it got infected then I went to hemo. I had hernia surgery, the mesh screen deteriorated so they had to go back in and do another one 2 years later, everything your son is going through I been there. But tell him to be encouraged and not to give up, it’s gonna get better if he believes it will & FSGS is not a death sentence to his new kidney. My uncle was diagnosed with FSGS in 1974 when transplants were in the early stages. My uncle is going strong 46 years with a deceased donor kidney and with a creatinine of 1.1 and as far as FSGS goes new studies are happening everyday to combat this horrible disease. Good luck & GOD BLESS you and your Son & remember maxim8na its gonna get better.

[maximina in reply to sidmoesr]

Your message is so reassuring. Thank you so much. My son will have hernia surgery tomorrow, and the hemodialysis exhausts him. I will have him read your message. We hope someday he gets a kidney transplant and a new lease on life..... he graduated from University with honors, and has been battling this FSGS for so long....... he wants to have his life back. God bless you for your kind words. FSGS'patient's Mom!