Its been a little less than 10 years since my transplant. 11 days of bliss was all I got though. I've been thinking of the pros and cons of trying another transplant.
Dr. Tim Goodship of England has a project going where they have identified a sequence of genes which are responsible for 30% of the people with familial Atypical Hemolytic Uremic Syndrome (my native disease) i.e., 30% of people who have HUS in their genes have this gene sequence.
I sent my blood sample to him and I have just got the complete set of results that say that I am not in that 30%. If I was, then I could rule out a transplant because if HUS was in my genes, it would definitely recur in the new kidney.
Now that I am not in that 30%, does it mean I can safely have a transplant? No. Because I could be in the other 70% that has HUS in the genes but whose gene sequence has not been identified.
I remember the days leading to the first transplant. The choice of immunosuppression was always an issue. Cyclosporin was most commonly used here. But there were papers that had shown that transplants with Cyclosporin did cause HUS recurrence.
On the other hand, there were people with HUS who got transplants with Cyclosporin and did not have recurrence.
There were other options like Tacrolimus and MMF.
I felt a shiver run down my spine when my nephrologist asked me what immunosuppression I thought we should use. Wasn't he the one who had to decide? It was not as if he did not know but this was a tricky situation and he knew that I had done a lot of reading up on the internet. But still, it was quite disconcerting for me to help with that decision. I got the feeling that he was not sure of what he was doing.
In the end of course, we used Cyclosporin and HUS recurred.
Recently I showed the pictures of my graft biopsy slides to Neeraja, a friend who is a Nephropathologist and she felt that the biopsy showed signs that were consistent with Cyclosporin toxicity or HUS recurrence.
So, the question that still needs to be answered is - if I go in for another transplant, what immunosuppression should be used?