June 12 – Progress report
We had kind of a bad
week last week. Ray had been getting weaker and sleeping all the time, plus a
couple of other problems and we knew the doctor was worried about his liver
functions. We had an appointment Friday for lab tests. After the lab tests the
nurse said we could go home and they would let us know the results. She called
just as we got home and said the liver functions were not good and the doctor
wanted us to come back for more tests and maybe a sonogram if they could
schedule it. She also said to pack for the possibility of being put in the
hospital. A little later, as we were about to leave to go back, they called and
said "don't come - we can't get an appointment for the sonogram today.
Wait to hear from us." So, we stayed home and waited. An hour or two later
the nurse called again and asked where we were; she thought we were coming and
the doctor was waiting! We told her about the other call and it turned out it
was the appointment desk and she apologized for the misunderstanding. So, again
we packed up and headed back to OHSU where he had more blood tests and the
doctor came to talk to us. He checked Ray out and said he didn't look as bad as
his test results indicated (eyes weren't yellow, something they look for with
liver problems.) Doctor said he wanted to let us go home, but to call and go to
the ER if Ray got worse. He got really weak and tired on Saturday, plus dark
urine and it finally dawned on Nancy
that these were some of the side effects the doctor said to watch for because
he'd started him on a statin for high cholesterol. If that happened he said to
stop the statin and let them know. So we stopped giving Ray the statin and the
next day he was feeling better. Funny thing was, the doctor called us at home
on Sunday and said he'd been reviewing his tests and wanted us to stop the
statin! Nancy shared with him we'd figured that out and he was glad. We had to be back at the clinic
Monday morning at 8:00 am for more blood tests and to see if they could work
him in for a sonogram. So we headed out early Monday morning and were able to
get the sonogram and blood tests. The doctor came to see us again and said his
enzyme levels were improving and the sonogram didn't show anything out of the
ordinary. He was thinking it was either the statin that caused the problems, or
maybe Ray passed a small gallstone without realizing it, since they know he has
some gallstones. Anyway, he is doing better and feeling stronger. We went back
to the clinic Friday to have blood tests again. The doctor leaves on vacation
then, but there will be other doctors and nurse practitioners to see him. He'll
have a bone marrow biopsy and tap of the Ommaya in his head to test the spinal
fluid. These are standard tests at the end of the first year of the transplant.
We just keep going, through all the ups and downs. It can be really wearing at
times.
We were so afraid Ray
would be put back in the hospital just before Kari and family arrived from Tennessee. They were
scheduled to arrive that coming weekend. One of Travis's first questions was
"will Grandpa be at home?" and Kari had to tell him that's the plan,
but no guarantees. Kari and family were on the road. They called from North Platte, Nebraska
and were headed for Wyoming the next day to
visit Charles’ cousin and then on to Yellowstone.
They expected to be here Saturday or Sunday.
