Trials and tribulations of a patient in search of a bone marrow transplant

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Thursday, July 17, 2008

In and Out

Steve is back out of the hospital. Eight days this time. They finally pulled his IV-line the day before he left, but didn't replace it. They gave him platelets every day so that they could install a new line, but the IV team just never showed up and Steve was insisting to go home. We shall see how it goes at the clinic today with multiple "sticks".

Here are photos from a few days ago. Still bald and missing most of his eyebrows.
This is what happens to Steve's feet when his kidney function isn't so great. They are back down to skinny now, and this is nothing compared to the bout he had a few weeks after his transplant.
His stepfather Paul came to visit this past week-end with his wife Betsy. They arrived bearing Neuhaus dark chocolate and a bag of books for Steve. He and Betsy are both Sci-Fi fans. A big celebration dinner had been planned at Steve's favorite Italian restaurant, but since Steve was in the hospital, it is postponed for a month or two.

Betsy is trying to block the light that was bouncing off Steve's shiny pate.

Lisa has an operation scheduled for today. Sending her all best wishes for an easy time of it.

Thursday, July 10, 2008

Dejà Vu All Over Again, Back to a Pink Room

Here's Steve in a photo from last week, waiting for his blood draw.
Well, after a few weeks of doing well, Steve started feeling pretty rotten, very fatigued, blacking out and a handful of other strange symptoms. We ended up going every other day for tests and blood and plasma transfusions last week. His kidney function was dropping, his blood pressure sometimes extremely low. Then Sunday night it became really bad and Monday we went to the clinic.

He couldn't walk without passing out (he had to come down the stairs at his house sliding step by step on his bottom), so transport was by wheel chair. The clinic was extremely crowded after the holiday week-end. Steve looked like he was about to slip out of the wheelchair in the waiting room, so I begged a bed or at least a recliner in the infusion area. He was shivering and shaking and his feet were burning painfully. As cold as he was, he couldn't stand even a sheet touching his feet.

They began drawing blood and blood and more blood for tests. Long story short, Dr. Agura put Steve back in the hospital. There were no beds on the BMT floor, so they put him in the ICU in the main hospital. It was quite a shock after the caring and knowledgeable staff at the BMT. Transplant patients are so specialized in their care and treatment and the nurses in the ICU didn't have a clue. Plus family access in the main hospital was much more restricted and I kept tangling with the staff. I didn't leave until the middle of the night after being sure they weren't going to do Steve any harm. If they were running a popularity contest with those nurses, I would not have won any points.

After a night there, they managed to find a bed in the BMT ICU for Steve. Then in the middle of the night on Wednesday, they moved him off the BMT ICU into the main wing. Someone needed the ICU more than he did. All the nurses told him how good it was to see him again. Not that Steve loves going back to the hospital, but at least they inspire confidence that they will take care of him.

Early tests show he has a bacterial infection and EBV (Epstein-Barre Virus). EBV causes mononucleosis amongst other things. Steve is being treated for these and they say he will be in hospital for about a week. They have no idea what caused the foot pain but it is gone. He is in room 428 and can have visitors. He is feeling better now.

The good news is there are still no leukemia cells showing up in Steve's "storebought" blood. Bless the donor!

Here is a photo of Steve last Thursday at the clinic as Maria drew blood. Wearing a hat for warmth inside and sun protection outside. He is still quite bald, but a few moustache hairs are coming in. Still waiting for eyebrows and that mop of hair he normally has.