12-07-2016 update

It's now been a month since our last post.  Since that last post, the CMV result has been at zero once and above each week since.  Not a lot, but it is enough that while I no longer take the IV infusion,  I am on the oral medication.  We have no idea for how long but in reality, it is just more pills twice daily.  I heard that there is a need for multiple zero readings in a row.  But the oral medications are so preferable to the pump infusions twice daily.

We were allowed to go on the cruise and had fun.  It seemed like life is getting back to normal.

I did have several more pre-cancerous spots taken off of my face.  There were several removed (frozen off) several months ago.  One of my medications makes me 65 times more likely than most to get skin cancers.  More precautions, sunscreen and a hat. 

So, today we went in for a clinic visit with Dr. Masri followed by a biopsy.  That was the plan but the best laid plans....A few seconds with a stethoscope on my chest and the day got complicated and a bit scary.  She heard some pre-ventricular contractions, about one every two or three beats.  It could be a sign of rejection so she ordered an EKG and an Echocardiogram.  The biopsy was labeled STAT, which means ASAP.  Dr. Masri gave us different scenarios depending on test result.  One was that I might be admitted to the hospital that night.  It was about two hours before the biopsy was scheduled so Co went home to pack an overnight bag, just in case.  She got back in time for the Echo and after it was read, Dr. Masri let us go home with a promise of a call when results were in.  Results so far were good so we headed home.

Wei, my transplant coordinator, called when we were on our way home to tell us that there was zero-no significant rejection from the biopsy.  Great news.  Now there will be more tests.  Another blood draw on Friday plus another EKG on Friday.  There is the possibility of a Holter monitor (http://www.mayoclinic.org/tests-procedures/holter-monitor/basics/definition/prc-20015037) being worn for several days to track the irregular heartbeats.  After that , who knows?  There are many possibilities and we will learn more about them as time passes.

We will send an update when we have more information.  But this reinforces something that we have not talked about in the blog.  We had always looked at a transplant as the end of a journey.  In reality, it the beginning of a whole different journey.  We have to be alert to all sorts of outside influences that could cause infections that could damage the new heart.  Coughs, colds, viruses, bacteria and/or fungi. 

We'll let you know when we know more.  We are grateful to be home together tonight.  We never know when there will be the next admit to the hospital.  We are also grateful for excellent medical insurance, thank you, Bank of America!

Colleen and John