Question for people who have had more than one transplant
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amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
Question for people who have had more than one transplant
Hi, For those people who have had second or third transplants, could you let me know if you had a nephrectomy of the previous transplant? Also, what was your PRA level? Did your PRA level go up or down after the nephrectomy? The reason that I ask is that my PRA level is very high (100%) and although I know that this may never come down, I have been told that sometimes it does. However, I still have my non-functioning transplant kidney in situ. and the doctors are refusing to remove it as it is not causing any symptoms. They say that the risks outweigh the benefits and argue that it can act as a sponge for antibodies, and if you remove it, then the PRA can get higher. Well, as mine is 100% I fail to understand that as an arguement. Furthermore, I cannot understand how mine will ever fall when I have the transplant still there, a foreign object causing my body to continue making antibodies. My dialysis neph. is all for getting it removed but as the surgeons are against it, he goes along with them. I did say to him, that maybe I need to start getting 'symptoms' then they will remove it, and he did agree with a smile, that maybe I should. Your replies would be greatly appreciated and I thank you in advance for your response. Amanda
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JMan
- Posts: 3473
- Joined: Fri Apr 23, 2004 10:21 am
- Location: Lives in a slightly weird bit of Shropshire called Telford!
Hi Amanda,
I did have a transplant nephrectomy (removal of previous transplants) but this was more to do with my overall health condition than the fact that its 'usually' done or any specific protocol.
Not sure what my PRA level was (panel reactive antibody (PRA)) (I had to go an look that one up folks
) I do know that after all the stuff that I had, chemo, & 9ish years on haemodialysis, my antibodies were still pretty low. Possibly the heavy chemo I had somehow 'wiped' some of the antibodies.. NOT a recommended way to go IMO though.
What removing the transplant kidneys DID do however was make me very stable and immune suppressive free whilst on haemodialysis.
Just my experiences.
I did have a transplant nephrectomy (removal of previous transplants) but this was more to do with my overall health condition than the fact that its 'usually' done or any specific protocol.
Not sure what my PRA level was (panel reactive antibody (PRA)) (I had to go an look that one up folks
) I do know that after all the stuff that I had, chemo, & 9ish years on haemodialysis, my antibodies were still pretty low. Possibly the heavy chemo I had somehow 'wiped' some of the antibodies.. NOT a recommended way to go IMO though.What removing the transplant kidneys DID do however was make me very stable and immune suppressive free whilst on haemodialysis.
Just my experiences.
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L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
2nd transplant
Hi Amanda,
Sorry it's taken so long to reply but I forgot my login details !!!
My first transplant was removed, it had become necrotic so I had no choice.
My antibody level ran at about 95-98% for 8 years after, I was offered a treatment to reduce them after about 6 yrs but it sounded too toxic so I refused as wasn't really sure that the transplant route was one I wanted to take again. However somehow (still not sure why) my antibodies suddenly dropped in Aug/Sept 04 to less that 50%, at this point my neph red listed me (without my knowledge) and then a good match became available on 21/9/04. I had the tx same day and currently run a creatinine of 89. It averages around 100. I expect your calculations are different though.
I fully agree with you that the tx kidney is probably raising your antibody levels and in your situation would want it removed. If it has no function and you are well then persist in asking as I would want this one removed if it failed.
Take care.
Sorry it's taken so long to reply but I forgot my login details !!!
My first transplant was removed, it had become necrotic so I had no choice.
My antibody level ran at about 95-98% for 8 years after, I was offered a treatment to reduce them after about 6 yrs but it sounded too toxic so I refused as wasn't really sure that the transplant route was one I wanted to take again. However somehow (still not sure why) my antibodies suddenly dropped in Aug/Sept 04 to less that 50%, at this point my neph red listed me (without my knowledge) and then a good match became available on 21/9/04. I had the tx same day and currently run a creatinine of 89. It averages around 100. I expect your calculations are different though.
I fully agree with you that the tx kidney is probably raising your antibody levels and in your situation would want it removed. If it has no function and you are well then persist in asking as I would want this one removed if it failed.
Take care.
2nd tx
Hi Amanda:
I was running a temp while 1st tx was "fading away" and there was a time when they were considering its removal. In the end it was not removed, though during my 2nd tx I recognized a fellow who was across the hall from me during my 1st tx and he was at the hospital having his first TX removed since it had failed and was causing complications.
I was running a temp while 1st tx was "fading away" and there was a time when they were considering its removal. In the end it was not removed, though during my 2nd tx I recognized a fellow who was across the hall from me during my 1st tx and he was at the hospital having his first TX removed since it had failed and was causing complications.