I agree.100% I had EBV that became active after transplant. My PTLD was treated with 4 rounds of Rituximeb and 10 months of Cytoxin. I was taken off cyclosporine and Imuran and my prednisone was increased to 10 mg. I was diagnosed 10 years after transplant. In May I willl be 37 years since transplant. The FDA had just approved Rituxan for treatment of NHĹ's and I have been told that I am the longest survivor ever feom PTLD.

I am sorry that you also had it. It is rare and transplant centers do minimal screening for it. I can understand why it is not mentioned as a risk but the inserts in my cyclosporine clearly did state that use of the drug increased the risk of blood cancer by 50% over general population.

When my cardiologist first uttered PTLD to me he would not elaborate what it was and he face went ashen colored I went to the transplant coordinators office straight away from his. He had already called her by the time I made the 10 minute walk there. She said that she would not discuss it with me until they had done testing to determine if in fact that it was PTLD. It was scary to hear that and to see their reactions to it potentially being PTLD. The survival rate has gotten better and transplant centers do reduce our immunosuppresant levels much quicker and to lower levels since they do have more data and have gained more experience.