Day 29
John seemed better for most of Friday, well enough watch episodes of Buffy the Vampire Slayer and spend a little time online. The account he wrote (http://www.livejournal.com/users/johnvscancer/) of Thurday's experience with the doctor was hard to read, but voicing it probably helped him cope. I called patient relations at the clinic and asked for their help in working with this doctor or a physician change. While the person I talked to was sympathetic, nothing came of it Friday.
John had a platelet infusion in the afternoon on the triage floor at the clinic. As they were preparing to start, John's current PA nurse made a point of coming by to check and spend some time talking. It was a thoughtful gesture and it was clear that he, the PA, felt for John and was trying to help. In a few days, he will rotate out and John will have a new PA. The doctor will rotate out a week later, unless we do something about his assignment to John earlier.
John's triage nurse examined John carefully (spending more time than the combined time his doctor had to date) and became concerned over rashes he had begun to have, which can be signs of GVHD. As John talked with the PA, he began to develop blotches of rashes all over his body, which came and went randomly for the next two hours. His nurse was concerned enough that she essentially never left the room and finally gave him a dose of Benadryl direct into his blood stream. This, of course, put him to sleep for several hours, but I was able to get him home in the process and he was much better when he woke up in time to go back to bed. He slept well through the night.
His nurse had several others examine John and took blood cultures to check for any infection, so we may learn more by Monday. You have to hope that John doesn't have a problem taking steroids, because there isn't much of anything else that can be done to deal with GVHD.
Today's project will be to work on finding foods that John will be willing to eat. He has most of his taste back, but no interest in eating. At times he says he feels worse than he did in the hospital, but hopefully we will see improvement soon.
John had a platelet infusion in the afternoon on the triage floor at the clinic. As they were preparing to start, John's current PA nurse made a point of coming by to check and spend some time talking. It was a thoughtful gesture and it was clear that he, the PA, felt for John and was trying to help. In a few days, he will rotate out and John will have a new PA. The doctor will rotate out a week later, unless we do something about his assignment to John earlier.
John's triage nurse examined John carefully (spending more time than the combined time his doctor had to date) and became concerned over rashes he had begun to have, which can be signs of GVHD. As John talked with the PA, he began to develop blotches of rashes all over his body, which came and went randomly for the next two hours. His nurse was concerned enough that she essentially never left the room and finally gave him a dose of Benadryl direct into his blood stream. This, of course, put him to sleep for several hours, but I was able to get him home in the process and he was much better when he woke up in time to go back to bed. He slept well through the night.
His nurse had several others examine John and took blood cultures to check for any infection, so we may learn more by Monday. You have to hope that John doesn't have a problem taking steroids, because there isn't much of anything else that can be done to deal with GVHD.
Today's project will be to work on finding foods that John will be willing to eat. He has most of his taste back, but no interest in eating. At times he says he feels worse than he did in the hospital, but hopefully we will see improvement soon.
re John's lack of appetite: If you haven't already, you might try "Boost". It's similar to Ensure but tastes better. It comes in fruit flavors (without milk and the lactose intolerance that some experience as a side effect of chemo) as well as chocolate and vanilla with a milk base. It's nutritionally loaded and pretty filling and easier to get down than real food.
fwiw
from an AML patient you don't know who is praying for all of you.
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