Bad news - Highly Sensitized...Questions?

[Mumzy60]

Hello, I am posting for my mother who is 64 and has been doing PD treatments for almost 3 years now. She is my world. She is active on the transplant list but we were told she is "highly sensitized" meaning she has high levels of antibodies and will be a hard match. The transplant hospital (UPMC Pittsburgh) said they are transplanting patients with around a 5 year wait and my mom is at the 3 year mark. I'm really saddened from what little I have googled and found regarding this issue; mainly only 30% of kidney transplant patients are branded as highly sensitized and worse yet less than 15% of these people are transplanted each year and that it can take 3 to 4 times longer, if ever.

Then I worry about the longevity of PD dialysis and how long till this method is no longer effective. She will be crushed if she ever has to go back to Hemo. I know this varies on a lot of circumstances but she has never had a pd infection. I know it's very important to protect the peritoneal membrane. I'm wondering how long people on average are successful on pd treatments???

I'd give her one of my own kidneys in a heartbeat, but she downright refuses. I have high blood pressure anyways but I'd more than gladly give it to her if only they'd take it from me.

Can anyone comment on being "highly sensitized" or years successful on PD?

Thanks
Geno

[casper2636]

Mumzy60,I too have been qualified as 'highly sensitized'. This is due to my insurance not wanting to pay a higher price of a epogen replacement (I'm allergic to epogen, which reproduces red blood cells for the bodies failed kidneys. I went for a year 1/2 getting blood transfusions every 3 weeks due to anemia. Thus, I got everybody and their uncles antibodies. The transplant center say is it would take one special kidney to have all the antibodies that I have. I do incenter treatment. My chance of finding a match is next to nil, but I still remain on the list just in case. You never know when luck might strike. Better to have tried and failed than not to have tried at all. Good luck to you! Just keep plugging along, who knows what the future holds!

[iolaire]

I'm not sensitized at this point.  But I from what I've read is the new kidney allocation process should put sensitized people at the top of the list should a match come in that would work for you.  Most of those statistics you read are based on the old allocation system (ended in December) so they hopefully may look more positive for sensitized people in the future.

People who are “highly sensitized” often wait five or more years before receiving even one kidney offer.

The new system will give immune sensitized candidates more priority for kidneys they aren’t likely to reject. People who have a slightly higher sensitivity will get slightly more priority than they would have under the previous system. People who are very highly sensitized (98 percent or above) will get much more priority. Kidneys that are offered first to highly sensitized candidates, but don’t get accepted for them, will then be offered to other patients.

from pdf: http://unos.org/wp-content/uploads/unos/Kidney_Brochure.pdf

[willowtreewren]

Even using the old allotment system, I know of people who were successfully transplanted (highly sensitized). Don't give up hope.

Aleta

[nursey66]

My husband had 100% PRA . He was on the list for 2 years,though inactive the first year. He is also blood type O. Since the allocation changes in December,2014,  he was called 4 times !!  1st time he was #5 on the list for the kidney, he didn't have to go in ,just be ready.  2nd time he was backup and was admitted to the hospital and the work up started. He went home the next day,as the primary patient took the kidney.  3rd time  called , he was primary.  We were on our way to the hospital ,it's a 100 mile drive , we were called on the cell and told to turn around and go home ,the doctors said the kidney was no good.  The 4th time was 3 weeks ago, we went, not really expecting a lot, but it worked out. So hang in , we didn't think he had a chance with the high antibodies, he had 2 siblings on the paired donor list as well.  Hope this helps some .