Highly Sensitized?

[Goofy]

Is there anyone else out there who is in the same position I am?  I'm 100% sensitized.  I've looked into programs for people like me, but right now I don't think its something I'd like to participate in.

[KICKSTART]

Goofy , could you explain what 100% sensitized is please , as i have never heard of this before and dont know what it is ?   

[paris]

Goofy, My PRA is 100%.  I have had IVIG and Rituxen infusions to try to lower it, but so far, there has been no change.  The doctors say mine is due to pregnancies.  It certainly makes getting a transplant harder, but we can keep trying and hoping.   

[Goofy]

I'm glad you asked!!  People are considered highly sensitized when they have too many antibodies.  You get antibodies through pregnancies, blood transfusions and organ transplants.  Unfortunately I have had all three. 

What ends up happening is that you get so many different antibodies, that its hard to find a match that won't reject.  Through blood tests, they can calculate what percentage of the population you would reject.  On a scale of 1 - 100 (100 being the worst) I'm sure you can guess where I fall.  Yes.....100%. 

Thats why I recently went to Cedars-Sinai in Los Angeles, CA.  I'm trying desperately to find something that can help me.  The article below can explain it a little better.  Make a note of the last sentence in the article.  Now, maybe people can see a little more insight as to why I'm stalling to start......

New Protocol Streamlines Therapy That Makes More Kidney Transplants Possible
Newswise - July 14, 2008

A new therapy developed at Cedars-Sinai Medical Center improves transplant rates and outcomes for patients awaiting living- and deceased-donor kidney transplantation, according to a study published in the July 17 issue of the New England Journal of Medicine.

The therapy may provide an option for many patients “sensitized” to transplant antigens (human leukocyte antigens, or HLA) who previously would not have been candidates for transplantation because of their intense immune response to these HLA targets.

HLA exposure can come through blood transfusions, previous transplantation or pregnancy. Once exposed, the immune system is sensitized to those antigens and develops antibodies to fight them. If a donor organ with the antigens is later transplanted, the antibodies respond, increasing the risk of rejection and loss of the organ. Antibodies to HLA were previously considered an absolute contraindication to transplantation – the risk was too high for transplantation to be an option.

About 30 percent of the 74,000 patients on the transplant waiting lists for a deceased-donor kidney are sensitized, and those with exceptionally high antibody levels are considered especially poor candidates for transplantation. In fact, each year only 6.5 percent of highly sensitized patients receive a transplant. Most remain on dialysis indefinitely, without hope for a life-saving transplant.
 

[Goofy]

Paris, I'm sorry to hear you are also 100% sensitived.  It stinks!  Yes, there is always hope, but I'm also being realstic that my chances of getting a transplant don't look too good. 

One good thing, not that many years ago, people like us couldn't even get a chance at a transplant.  Let's hope they find a solution in our life time!

Have you checked into any programs?  If you don't mind me asking, do you live in the US?

[paris]

I'm in North Carolina.  The series of infusions I had this summer is similar to the program at Cedars.  It has worked well for some of our members.  I have been on the infamous list for almost four years and the transplant team are very honest about my chances.  But, I have tried all I can do for now.    This site has helped me learn what other hospitals are trying and keeps me up to date on all the new options.     

[KICKSTART]

Thanks for explaining , how did you come to find this out ? Did it just show up on a blood test or did you have a special test ? No one over here has ever mentioned this subject but i am begining to wonder now. The only reason i was ever given for my kidney failure was that my bodies own antibodies attacked them ! Could this be a link to what you are talking about ? could i be the same ?

[zona]

I am sorry to hear about this and hope it works out for you. KICKSTART, I was wondering the same thing as thats what they told me about my kidney failure.

[KICKSTART]

I just wonder if they say that because they havent really got a clue!!!

[paris]

When you go through the process of having donors tested:  antigen and antibodies testing is part of test process.  I have been fortunate enough to have had 6 people tested for living donor, but my body reacts to everyone.  My son is a 5/6 antigen match to me, but my antibodies react to him.  So, until we can lower the PRA (panel reactive antigens) my body won't accept any kidney (I still think possitively).   I send my blood in every month to the transplant center so it is available to crossmatch when kidneys come in.  With IVIG and/or plasmapheresis, centers are making great strides in improving people's PRA.  A few years ago, none of this was possible, so we are going in the right direction.  Just think what can happen in the next ten years!!   

[Goofy]

That's how I found out I was highly sensitized.  I was applying to be on another transplant list and when they did the blood work, they told me about the antibodies.

[Des]

Just to ad.

I found out that if any of the baby's fluid leaks into your bloodstream or if you had a miscarraige or a tube pregnancy (spelling, sorry) that is how you build up antibodies during pregnancies. Because your baby has a diff blood type/group than yours.
   This was news to me so I thought I'd share.

[paris]

My pregnancies are the cause of my antibodies.  Each time, my body thought the fetus was a foreign object and built up more and more antibodies.    Three causes for high PRA:  Blood transfusions, multiple transplants and pregnancies.    My four children have the same blood type as me and were all healthy and well.  Like I said in an earlier post, one son is a 5/6 antigen match with the same blood type.  Sounds like he should be a great donor for me ---- and then the antibody problem comes into play. 

[KICKSTART]

I think its cruel that they wait till you go for transplant evaluation before they do that test . I mean you must feel so near and yet so far, the thoughts of going on the list being snatched away from.

[Rerun]

My PRA is 98% so I'm not even going to try for another transplant.  I was listed for a couple of years in Sacramento and they didn't even mention IVIG or Plasmapheresis.  So, if they didn't even mention it to me then they weren't trying very hard for me.

I moved to Spokane and I realized I'd have to go through test after test, year after year and for what?  Nothing.

Plus, if I would get a transplant I'd be kicked off disability in 12 months and have to find a good job with health benefits.   I don't feel comfortable with that hard line drawn in the sand.

So, that is why I'm not going for transplant number 2.

[mk]

Hi Goofy Take a look at some threads in the Transplant stories section.... positive crossmatch transplants, high antigens, high antibodies, highly sensitized ....all look at same thing. There have been a number of members who have had this kind of transplant. It seems that the capability to help us with high antibodies is really improving quickly. I was highly sensitiized and had given up on ever getting a transplant. I had 10 living donors tested for me and no one matched due to the antibodies.  When I started the transplant process hoping to have one before dialysis I didn't know they could do a transplant if you didn't match your donor and in Canada they had not strating doing the positive crossmatch transplant. But in late February this year, I was the 29th patient in Canada to have a successful positive crossmatch transplant in Toronto. It can happen for others too, you too. Hope you are feeling alright and getting your mind around starting dialysis. It's a hard step but it was harder in my head than in reality. and I did feel better. And when they were able to do the transplant, I was healthy enough to get through it. thinking of you. Mary

[Lillupie]

Do you have lupus? Lupus usually causes your immune system to attack your kidneys or other organs. No it is not the same. Your antibodies can cause rejection. YEa it is from blood transfusion and pregnancies as well as organ transplants. I guess you develop them from foreign things(i.e. pregnancies, blood transfusions, and previous transplants)

Lisa

Thanks for explaining , how did you come to find this out ? Did it just show up on a blood test or did you have a special test ? No one over here has ever mentioned this subject but i am begining to wonder now. The only reason i was ever given for my kidney failure was that my bodies own antibodies attacked them ! Could this be a link to what you are talking about ? could i be the same ?