Went back to Mayo Clinic on April 13th.  Ended up with 2 extra days of appointments, so that's a hint how it went.  My amazing friend (of 35 years), Marianne S. took me on this latest trip.  Remember my 3 issues are amyloidosis, heart transplant and transplant lymphoma (PTLD).  My heart is fairly stable.  I have been on a low dose of chemo (Velcade) for the last 28 months for the amyloidosis symptoms in my GI tract.  One side effect, neuropathy has gotten so bad that they stopped the Velcade.  So I am on a chemo holiday for now.  If my blood tests or symptoms get worse, they will consider putting me on the chemo I was on in '06 and '07 (Melphalan).  There was talk of a possible stem cell transplant (my cells have been in the fridge at Mayo for years) but that might be too risky.
  I had been feeling safe regarding the PTLD because 'it comes back quickly, not after 3 year remission'.  Well it is not back but one blood test went through the roof (EBV copies) and they believe it is trying to come back.  They reduced one of my anti-rejection drugs so my body can fight the virus but that increases my risk for a serious heart rejection and I am almost always in a slight rejection.  I have to have a heart biopsy in June, even though biopsies damage my tricuspid valve and it is already leaking severely and one of these times, I may need surgery to fix it.
  The game plan is to send Mayo blood regularly and see how the important tests turn out.  If there is no scary change I will return to Mayo in June.  I feel OK which is encouraging.  My case is ' complicated and atypical'.  Not a good time to be special.
  On a happier note, we were able to meet with Mike and Dianne L. from MN.  Mike got his heart 10 days after me.  We also got to see Kendon and his parents.  Kendon got his heart the same day as me, April 11, 2011.  I think he was in second grade at the time.  Dr. Jack, the therapy dog, came out of retirement to see Kendon and we got to visit with him too.  Marianne and I had dinner with my friend, Sr. Pat.  I met Sr. Pat when she worked at The Gift of Life Transplant House.  There was no room at the transplant house (they had to turn 19 people away).
  It has now been 4 years since my heart transplant.  Please pray for my donor family.
  Sorry this is so detailed but this stuff is hard to summarize.  Also sorry for the delay, the blog was outsmarting me.  Be well, Margaret