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

January 20, 2015 – Back from Checkup

We just got back from a checkup.  First, all of the construction was gone for the first time in a long time, when we got on the highway in Illinois we did NOT see the sign – ‘Construction Next 35 Miles’ and that was a very big happy surprise.

This visit we did get into the old transplant house, happy surprise number 2.

Monday morning we met with transplant.  Her EF (Ejection Fraction) was effectively the same, 53%, which means that her heart is the same as the recent previous visits.  She does have severe tricuspid valve leakage, she has had some tricuspid value leakage since day one but has gotten worse from all the biopsies, but this is not new with this checkup.  Some bicuspid valve leakage is not uncommon for the general public but hers has turned severe because of all the biopsies.  The result of this is that they will NOT be doing any more biopsies unless there are clinical changes to prevent totally screwing up her valve which would require a replacement tricuspid valve and nobody wants that. For your general information they do not do biopsies on pediatric transplants, they just uses echos (echocardiograms). 

We also had a bit of education that made us feel better.  Rejection is only clinically significant when the heart function is effected and so far there has not been any dramatic heart function changes, Yippee to know that! So when the biopsies showed a R2 level rejection it was caught before any real damage and R1 rejections are not usually even treated. (R2 is worse than R1).  Even if there is some heart function changes once the rejection is stopped (more drugs) then the heart can repair itself  Bottom line quote from transplant doc was ‘I think you are doing very, very well’. 
Happy surprise number 3.

In the afternoon we met with hematology and her FLC (Free Light Chain) result is basically unchanged, good news.  Hematology is also very pleased.  Happy not so much a surprise number 4.

Here is the ‘we don’t know’ topic, they had not get the results of the Epstein–Barr virus (EBV) count before we met with any of the docs, long story.  The number made a pretty good jump up so we will have to wait to hear from hematology to see if anyone cares and if so what needs to be done.

All in all it was a good trip.

October 31, 2014 – Recent trip to Mayo

First of all, BOO!  Are you scared yet? No, well then Happy Halloween!  We were in the always rockin’ Rochester Minn this week for a checkup.  We met with transplant and hematology and had some social fun also.

Our meeting with transplant went well.  Margaret did not have a biopsy since she has had a lot of them and they are getting hard to do because she has had so many and her EF (Ejection Fraction) was the same as it was on the last trip. They even checked it side-by-side with the last echo and it was the same.  Her potassium is normal but she is currently taking 4 potassium pills a day to get it that way.  They said ‘come back in three months’ so that is good.  Bottom line from a transplant view is stable.

We also met with hematology and her FLC (Free Light Chains, a marker for amyloidosis) was 3.7 which is pretty darn good so happy, happy, happy.  The doctor also said that if there was a need in the future she would now be eligible for a SCT (Stem Cell Transplant) so that is one more option if it is needed.  Before she was not eligible because of the lymphoma. Bottom line from hematology, stable.

The bad news from the trip was we were not able to get into the transplant house, ok, we know how to walk into the house, we just didn’t get to stay there. And by the way when that is the worst news you get than that is a pretty good trip.  We had the opportunity to meet with Mike and Dianne L., Mike transplanted 10 days after Margaret.  We were lucky enough to be able to eat dinner Sunday night and Monday night with them, it was so much fun, it is always nice to be able to see them.  Mike and Dianne brought us a very tasty treat and it was difficult not to eat it all at once but then I would not have been able to sleep that night, lots of sugar!!

We also saw another person from the local support group, but since I do not have her permission, I will not use her name.  The good news was she was going back for a checkup which is great!

That’s the recap of our trip.