1. < Kidney & Bladder

Help in regards to FSGS kidney disease

Posted by fsgstage5 @fsgstage5, Oct 22 10:42pm

I'm a patient with FSGS and stage 5. Peritoneal catheter insertion was done 2 weeks ago. I need to know what are to expect in terms of waiting for kidney transplant and how much?

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maggieinfp | @maggieinfp | Oct 23 7:21am

i was stage 5 though avoided dialysis. Was told 5-7 years on list without a live donor but was lucky to get one after 13 months. No costs…all covered on Medicare but some drug costs. Good Luck 🙏

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Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 24 7:12pm

@fsgstage5 Welcome to Mayo Clinic Connect!

How is the healing doing for your catheter? You'll be undergoing training for starting peritoneal dialysis, soon, if you haven't started it already. Your dialysis frequency and how much to dialyze will be based on calculations made by your medical team.

Once you reached eGFR of 20% you were eligible to be placed on the transplant list. Was this done? Of course, prior to transplant you will need to go through quite a regimen of testing [physical, and emotional] to make sure you are a good candidate for this. As @maggieinfp stated, cost is covered by Medicare. How long you wait for a transplant can be based on the part of the country you are in, and if you are able to find a living donor.
Ginger

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Frayaz | @frayfl | Oct 27 1:55pm

When I was diagnosed with FSGS I was told that I would be on dialysis within 24 months.

25 years later I received a deceased doner 100% match kidney due to FSGS.

This website helped me get listed at 4 transplant centers in 6 months and my transplant happened less than 9 months after contacting
https://transplantcoach.com/
The website makes it very easy to locate transplant centers with the shortest wait times.

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