Day Zero Plus Twenty-eight – Ahead of the Curve

We had to get up early again today because Jeff had an appointment at Penn.  Nurse Heather asked Jeff how he was doing and Jeff responded, “fair.”  We discussed with Heather issues related to his care: medications (Jeff wishes he didn’t need so many), blood counts (steadily rising), appetite (nausea is occasionally a problem), activity level (can walk a block or two), pain management, skin rash, sleep, and limitations in the use of his right arm and hand.  Then Heather conferred with Dr. Porter. 

Dr. Porter examined Jeff, reviewed some of the issues Heather reported and told us that nothing about this experience is normal for Jeff as compared to Jeff-a-year-ago.  However, compared to other BMT patients, he is “ahead of the curve.”  He likes the way Jeff looks - as do most people who see Jeff.  He likes his progress in terms of his blood counts, appetite and activity level.  He thinks that he will eventually refer Jeff to a neurologist because he doesn’t know the reason for Jeff’s arm and hand problems.  He also said he isn’t sure they’re going to be able to do anything about it.

I flushed Jeff’s catheter ports without a medical professional coaching me!  As Jeff would say, “I impressed the heck out of myself!”  Of course, Jeff made sure I didn’t unclamp at the wrong time and kept everything sterile.  After all, he has a lot at stake here.

Mother came to visit Jeff after she saw Pop at the nursing home.  She was very glad to see Jeff - the first time since before the transplant.  She wished she could have made it down to HUP to see him but she was taking care of Pop.  Besides, it would have been an ordeal to get her there.  Mother became upset talking about why it is necessary for Pop to be in the nursing home.  Caring for him at home was getting to be an impossible task for one person, even with good family support.  We know this but apparently Pop is having a hard time with it.

Today Keith moved back home for the rest of the summer, Kim came to visit for the afternoon and Kerry and Theresa were here in the evening.  It was nice to have all the kids around.  Keith, his friend Michael, and I helped Kerry and Theresa assemble boxes for the wedding favors.  I loved being able to do something to prepare for the big day!