October 20th - Follow up Visit

Our recent visit to Mayo was eventful.  It turns out that the things we thought were side effects to the anitrejection drugs are not side effects.  She had some additional testing and it was determined that due to her heart transplant and her immunosupression she has developed Post-transplant lymphoproliferative disorder (PTLD).  We are told that this is very treatable and the general opinion is that most if not all her ‘side effects’ are due to the lymphoma.  We go back soon to see the ‘expert’ in PTLD to see how we are going to treat it.  The treatment can range from just reducing her immunosupression to chemo (ick) and is based on a number of criteria.  She also has ulcerative colitis and mono, the colitis they think may be associated to the lymphoma and the mono (EBV – Epstein-Barr virus) is the root cause of all of it.  The donor had EBV and Margaret didn’t have it even though 2 weeks before our marriage she was told she had mono (great timing), which is the same basic virus, apparently they were wrong.  This mismatch and the immunosupression can lead to PTLD in a small number of people, funny we don’t feel special.

Well that is currently where we stand and will let you know when we know more.