What do you do after you have been told you have a less the 0.8% ch

[Scarlet]

So I have had my latest meeting with the transplant team and it turns out that I am a highly sensitized patient.......all the blood products and transfusions I received that helped me beat colon cancer when I was 30 have left me kind of screwed in the kidney donation lottery.  The docs have been great and have never tried to sugar coat anything, which I really appreciate....but not sure how I am supposed to feel each day.  My family is still hanging in there with 0.8. % is not 0%..... But it might as well be and the transplant head is not optimistic about my chances.

I am 47 yrs old.....and I know that I am not going to wake up one day and suddenly start feel better, we all know that is not how it works......so now what.  I have had to give up the career I loved due to my not knowing from one day to the next if it's going to be a good day or bad...... I could not do that to my boss whom I both respected and who REALLY needed to know her assistant would be in the office every day.

What is next for me?  What future goals to I have to work towards with anticipation?  What now??

Scarlet

[Ninanna]

There are programs for sensitized patients and in compatible donors. If you have someone who is willng to donate, you can enter the paired exchange program and that might help improve your odds.

[cariad]

There are programs for sensitized patients and in compatible donors. If you have someone who is willng to donate, you can enter the paired exchange program and that might help improve your odds.

Yes, these are great options and more and more transplant centers are offering de-sensitization. It's good to be realistic, but there *is* hope. One of our moderators, Paris, was very nearly 100% sensitized and she had a successful cadaver transplant about 4 years ago, and this was after the de-sensitization attempt that she went through did not take. Another member (Petey) is married to a man who was 100% sensitized and he received a transplant around the same time as Paris, but no idea how that turned out as she doesn't post on here anymore. There are also quite a few members who are in similar circumstances to you, so they would be the best people to talk to about how one comes to terms with this reality.

I'm sorry for your bad news. I guess I would give myself time to grieve and then start investigating how I could live as fully as possible on dialysis. Many members have shown that this is an entirely achievable goal.

[willowtreewren]

Petey's husband is doing fine! It has been almost 4 years for his transplant, too! He was t 100% PRA!!!!!

Don't give up hope.

 

Aleta

[MommyChick]

Hi Scarlet!

Please don't give up on hope! I know there are a bunch of people myself included on here that have high PRA's and still have the chance!
When I first started dialysis I had a high PRA of 99% which was caused from my first transplant along with plenty of blood transfusions and pregnancy while on dialysis. I figured if I could beat my odds at pregnancy on dialysis I could do the same for finding a kidney! I never gave up!! 
I was on dialysis for 8.5 years just waiting for that one & only phone call to come. My family and friends were not matches for me.
Mean while I had been going to John Hopkins in MD to get wait listed and to join there desensitization program/paired exchange. While all those years on dialysis my PRA jumped to 100% pretty much giving me no chance. But I never gave up!!
On October 2nd I recieved my one and only calling saying they had found a kidney for me. It was a perfect match 6/6 !!! Today I am 7 months post transplant and feeling great!

Sending hope and prayers your way! 

[jeannea]

Please don't give up yet. There are some different protocols for desensitization. If your doctor seems unsure, go see another doctor. Even without that, you could get lucky. I was at 97% and they told me I would get desensitization. Then I got called for a kidney before I had the procedure. I'm doing pretty well. Not perfect of course. But it can happen.

[mk]

Hello Scarlet.
I understand where you are. I also gave up my career to stay healthy as long as I could before I went on dialysis. I still miss my work. I was told that I was highly-sensitized too. The Transplant team said getting a donor off the list would be like winning a lottery, my chances were so low. I had 10 amazing people willing to donate, none matched. I think you are in Canada. The paired exchange program is successful for many highly-sensitized patients. My husband and I were the first couple that registered in the country. But there weren't very many pairs then. Instead I went to Toronto General Hospital Multi-Organ Transplant Centre for a positive crossmatch transplant. Through my home hospital in Ottawa I went through the desensitization program for four months and then had a successful transplant from my donor, my hero, my husband five years ago. They made us a match - clinically! we already were a love-match! It was worth the travel and staying in Toronto for 7 weeks. It was worth the heavier rejection drugs for the two year. I think more hospitals can do this in Canada now but Toronto probably still does the most highly sensitized patients. Don't let anyone discourage from looking at this option. I'm very blessed and I hope that can happen for you too. Cheers. Mary