High Risk Transplant Experiences

[ashok5085]

Hi warriorsMany of us face problem of high antibodies which delays possibilities of second/third transplant. I am facing this issue post first transplant failure. I got many cadaver calls but none was a match.

Please share your experiences and the outcome in such cases. What desensitization protocol did you follow and were you able to get a transplant? If yes, then how is the transplant doing. Your experiences are highly valuable. Thanks!

[Panda9122021]

I had high antibodies from Goodpasture Syndrome, or Anti-glomular basement membrane disease, a rare autoimmune disorder. I lost my kidneys over a two week period. When I first went into the hospital and was diagnosed I was told the antibodies would have to be down to a normal range and stay there for at least 6 months before I would be eligible for transplant. At first they did a procedure called plasmapheresus (sp?), which was a way to clean the antibodies out of my blood. Once they realized that my kidneys were totally gone with no chance of recovery, they stopped the procedure. They told me the antibodies would just go away on their own, which they did. My kidneys failed in Sept. of 2019 and by the following July my numbers were in the normal range, so we could begin the 6 month countdown.

The transplant center didn't wait, though, for those 6 months to end. They started me on the path of testing in the fall of 2020, so when I was cleared in January 2021, my living donor (my brother) and I could complete all the testing and get on the schedule for surgery, which was to have been July 2021. Complications came up and I received a kidney from a deceased donor (my brother's son) in Sept. 2021.

I am now two and a half years past transplant and all is well. I asked my doctor about the risk of the same disease coming back and taking out my new kidney, but he said it is almost unheard of with this particular disease.

I don't know if this fits with what you are asking about or not, but this was my experience. Blessings on you!

[Winner76]

Hi,

So I started dialysis in 2012 , PKD . I had really high antibodies 100% . My sister donated her kidney in 2016 but unfortunately developed a clot during the operation and was removed 3 days later. Went back on dialysis still with high antibodies and recieved the call in March 2020. Over all I feel really good . I have some issues since like steroid induced diabetes, high blood calcium and colitis but nothing I can’t manage. I am living a lot better than I use to.

Good luck and hang in there x

[ashok5085 in reply to Winner76]

You got a cadaver match with high antibodies?

[Winner76 in reply to ashok5085]

sorry what does cadaver mean ?

[CKD2-4 in reply to Winner76]

it is a kidney from a deceased person

[Winner76 in reply to CKD2-4]

Oh never heard that word 😂 yes I have a kidney from deceased donor it wasn’t a perfect match but they had to take the chance because I might of not got another.

[CKD2-4 in reply to Winner76]

I hope it stays healthy for many years.