My native kidney disease is Atypical Hemolytic Uremic Syndrome (aHUS). My first transplant - my mother was the donor - did not work out because they suspect aHUS recurred in the transplanted kidney. Subsequent examination of the slides of a biopsy of the transplanted kidney revealed that it could have been cyclosporin toxicity too.
The problem with aHUS is that there is a high risk of recurrence of the disease after a transplant. At the time of my first transplant in 1998, I had done a lot of research on the internet about this disease. Many papers referred to Dr. Bernard Kaplan of the Children's Hospital of Philadelphia. I got in touch with him and sent him the biopsy slides. My mother also met him later in a trip to the US. He suggested that I get my blood checked for some genetic defects that have been associated with aHUS. There was a Dr. Tim Goodship in the UK (Newcastle upon Tyne) whose lab was doing this study.
I got in touch with Dr. Goodship's lab. They offered to test for the genetic markers implicated in aHUS. Basically, I assumed, that if they did not find the genetic defects in my blood samples, I would consider a second transplant. They agreed to do it without a charge. I sent the samples. After a few months, the reports came back negative which meant that they could not find the genetic defect that was implicated in aHUS. Further study however revealed that the genetic defects they had looked for were only in a small percentage of the population with aHUS.
Recently, there have been some more genetic defects that have been associated with aHUS. There has also been a lot of research that I have found on the internet. There is also a drug called Eculizumab that has been successfully used in a lady with aHUS after her transplant. Most of the work in this area refers to a Dr. Giuseppe Remuzzi of the Mario Negri Institute in Bergamo, Italy. I sent him an email a few days back giving him a brief history of my problem and asking him what he thought about another transplant. His team got back to me and said we should perform some more tests to determine if the additional genetic defects that have identified in the last few years were present. After that they would recommend the course of action. They have offered to do the tests for free.
I have to send some samples of my blood (after some complicated processing - I have started the process of inquiring who in Hyderabad can do the processing) to Bergamo, Italy. The samples have to be packed in 7 kgs of dry ice in a thick thermocole box and must reach Italy in a maximum of two to three days. I am checking with Fedex if they can do this.
The end of this whole exercise is not a functioning, healthy kidney. The end of this whole exercise is simply to know if I should even try to get a functioning, healthy kidney.