What Doc said about antibodies

[Tracy]

So, I spoke to my Neph last night about my high antibodies.  He said I have 3 options.  1.  There is a couple of doctors that do desensitization protocols on people (one in California and one in Maryland).  They would have me come out there and they would do the iv treatment and then I would come back home and hope to get a transplant with lower antibodies (mine is 99%).  He said they might only bring them down to 80% or it could go as low as 50%.  You never know.

2. There is a new drug out that is used on people that have already had transplants that if they are having rejection issues, it is used as an iv to remove antibodies to prevent failure. He said he could write up a study to do an experiment on me (to the new drug company) and ask them if he could try it on me before a transplant to see if it would lower my antibodies, so hopefully I could get a transplant then.

3. Stay on D and maybe switch to home d.  He said he transplanted a patient last week that had 98% antibodies, but had been on home D for 18 years.  He said he wished he never would have gotten a transplant.  He said he and his wife were so used to life with D, that it was easier that life with a transplant.

Hmmm...OH YEAH, the first option, is over a million dollars.  Better make sure my insurance company will cover the ENTIRE amount before we try it.

Which would you choose?  I think NONE.  I am on in center D 3 nights a week.  I go, get it done and go home.  I asked him if I could just stay on D and hope for the best and he said yes, but sometimes, it is cheaper to do  the desensitization than to be on D for years and years.  btw, I am waiting on a pancreas and a kidney which must come from a cadaver.

What do yall think?  Thanks, Tracy

[paris]

Tracy,  My PRA was 100%. I am not sure why the doctor doesn't think there is a center in Texas that could do the infusion protocal to lower the PRA.  Several of us have gone through it and it isn't bad.  I did several rounds of IVIG and then Rituxin (a chemo drug).   And there is plasmapharesis.   One member went from the high 90's to 8 after having IVIG.   Most centers do these treatments.   Plasmaphersis is used in many other diseases, so in large hospitals it is a common treatment.    IVIG and Rituxin are infusions -- slow IV's over a few hours.  I think I would start doing reasearch on my own to see what centers to these treatments in Texas.  Houston has some of the best hospitals in the US.   

The insurance company covered my infusions.  The hospital gets all the approvals before they start treatments.   Mine ran about $25,000 a treatment. 

Several members have had the infusions to help slow down rejection.  It has helped many.    And I am one who thinks the transplant was totally worth it.  I am sad to hear about the patient who wished he never got one.  I bet there are so many here that would give their right arm to have the chance at a transplant.  It isn't for everyone.      But just taking some pills twice a day is such a little price to pay.  No time away at dialysis, no travels worries, less diet restrictions and you have every minute of your life to do what you want---not scheduled around dialysis.

Just my      It will be interesting to hear from others.     BTW, my nephrologist (who I trust very much) and no idea which centers locally did IVIG and plasmapheresis.  I simply called 3 centers in my state and got the answer immediately.     Good luck with your decision, Tracy.  We all will be thinking of you while you go through this decision process.   

[Rerun]

I'm with Paris.... there are more than 2 places in the United States that does IVIG Therapy.

I am 98% and have decided to not get another transplant.  I've had mine.  I'm just not going to fill their pockets with money while I wait forever. 

Paris was very fortunate and I'm glad for her.

Check out a closer place to do the IVIG therapy.