Are there any desensitization protocols for people without a living donor match?

[geoffcamp]

Is any one aware of or had experience trying any form do desensitizing body's immune system with out a living donor just waiting for completion pre transplant??  Ideas??  My doctors say they can't do anything without a living donor on deck. My sister and mother were tested both were not a match. I was not given any specifics of exactly why they were not a match and was so disappointed I did not ask. Look forward to learning and reading others experience. THX. G.

[okarol]

My understanding is that Medicare will cover desensitization once a patient has gotten 3 calls for a kidney but was ruled out due to high antibodies.
There are 2 of our members who come to mind who underwent desensitization (worked for one, not the other) and were both able to receive deceased donor kidneys.
How long have you been waitlisted? What is your PRA level? Have you tried reaching out beyond family or friends to find a donor?
You sister and mother would have to call the transplant team to find out why exactly they did not work out. The hospital is forbidden to share that info with you due to hippa privacy laws.

[geoffcamp]

I have been on the list since 2003 and have never been on hold the entire time. I gotba letter that said i was 1A status a few weeks ago. I have never received a call even as a back up to date either.  My PRA level is 99%. If we are thinking of the same test. I have only reached out to family and my sister has signed up for the swap program about a year ago and we have not heard a peep from that either. I must admit I'm a little scared to put myself out there and ask people to consider donating. I always think about what could happen to them and imagine the issues they might face making that decision. Even with my sister I wonder can she still get reasonable life insurance and things like that. (She is married and has 2 beautiful children). It scares me to think I might effect someone else's long term Heath or miss out on options because they were kind enough to offer a kidney to me. I'm told there is not much hope for a match and it seems to be true waiting this long. :-(