This trip was fairly routine. Just updates on my blood work. Most of these tests come back fairly
quickly. Everything is holding good in
the normal range. My liver and kidney functions
are good. I was a bit nourvous this time because they
have been lowering my immunosuppressant (Tachrolimus) meds. When they do this, graft vs Host (GvH) can
show up.
In fact, just a few days after lowering my dose (.5 mg twice
a day) I broke out in a rash on my arms and I noticed some minor stomach
discomfort. We started a steroid cream for the rash and
the stomach discomfort would pass quickly.
If the skin and stomach is the
extent of my GvH I’ll be happy. Those
that deal with liver or kidney issues seem to have a tougher go of it.
The doctors will continue to lower the Tachrolimus
medication but will wait a week or so until the rash resolves. They don’t want things to get out of control
since it is relatively minor now. They
are doing another Kimerism study to see if the lowering of my meds allows the
donor cells to take over the last bit of my immune system. We really need that to happen this time.
I’ve put back on about 10 pounds and have to admit that
looking back to the beginning of July, I looked pretty tough.
The biggest news of this trip is that they removed my chest
port (Hickman). Since the line was
tunneled under my skin, I had assumed they would knock me out to remove
it. Instead, it was done with some local
anesthetic and a good tug. It was pretty
quick and mostly painless. The nurse
referred to it as my graduation. I guess
it is appropriate that since I have 2 birthdays (my transplant day) that I have
another graduation. For me this is an
especially big milestone and I am happy to have those tubes gone.
We don’t return for another month and I’ll admit to becoming
pretty fond of Rochester. It is a nice
city and has a ton of great food options.
We tried a couple new places this week.
Twigs was fun as they have this thing where you cook your own meat over
a hot rock they deliver to the table. We
also tried Chester’s which is right by Mayo.
I wish we’d found that place before.
It was fantastic and I highly recommend. We even managed to catch up with my
transplant twin (Dale). We had our
transplants the same day. We had a nice
meal with Dale his wife, Jean and their daughter.
I was a little strange coming back to Rochester this
time. Time is a strange thing. I guess with me going back to work getting
back to more of a routine that the mind tends to start letting go of all the
discomfort of these last few months.
During my recovery I would often go to the movie theater to pass the
time. Andy and I went to the movies
during this trip and the moment we walked into the theater, it immediately reminded
me how bad I felt last time I was there.
The smell of baby shampoo also
brings things back. It has only been a
few weeks, but it sometime feels like it has been so long ago.
Last Monday was Labor Day, exactly 2 years from when this
all started. I’ve spent much of those
two years in hospitals and away from my family.
Priorities and perspectives have
certainly changed… but that is a story for another time. For now, all is good.
