Today is my sixth day in the hospital this round. Since surgery, I think I've spent as much time in the hospital as out.
It's becoming routine.
- Blood draw at 4:30
- Resident comes by around 6:00
- Vitals at 7:00
- Breakfast by 8:30
- Morning medicine 10:00
- Doctor rounds around 10:30
- Vitals and Pre-treatment at 11:00
- Thymoglobulin treatment from noon-5:00
- Eat lunch before nodding off
- Treatment knocks me out every afternoon for a long nap, repeatedly interrupted by vital sign checks
- Dinner by 6:00
- Walk the stairs/tour the hospital after dinner
- Vitals, evening medicine and blood draw by 10:00
- Try to busy myself with iPad, phone and tv until bedtime
it's predictable, tedious and not productive, but I want to get the benefits of treatment, so it's do-able. I remind myself it's necessary and the end results will outweigh my current frustration.
When the resident comes, he goes over the update as he knows it. He tells me I am going home today, that I'll need to go back on a blood thinner at home, and the blood in my urine is not really bleeding; it's the clearing out of the dead rejection cells.
I listen to everything he has to say, ask pertinent questions, and then remind myself the attending doctor will do rounds in a few hours and he's likely to have a completely different assessment. There hasn't been a day yet when the resident and the doctor didn't give me conflicting updates, and the attending doctor's opinion weighs heaviest.
Translation: Two more days of Thymoglobulin treatment to attack the rejection. A blood test taken today will take at least two days to culture to check how well the Thymoglobulin is ridding the rejection cells.
"And potential rejection will always be an issue," Dr Wali says. "We will have to monitor lab work routinely to screen for issues." Ugh. I want for this to be behind me, to be able to hit a fast forward button and jump to a time when my post-transplant complication memories are blurry and abstract because of all the tangible positives I've experienced since.
Dr Wali provides me with my first one: both my kidney and pancreas performance numbers are up, and he believes we are on the right track.
I really want him to be right.
I am sorry that you had to spend Thanksgiving in the hospital. I am so glad your numbers are looking a little better. It was great that they let you see Campbell and Gabriella. We love you and are praying that you get to come home soon.
ReplyDeleteThomas
Thank you very much! Our Thanksgiving, although not a traditional experience, was a good one. And I am hoping for home soon. We're lucky to have Dad here, and I'm looking to give him a well-deserved break soon. Happy Thanksgiving-love you guys!
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