What's the difference
Visiting Erik yesterday was enjoyable; meaning he didn't seem out of it as he had been the weekend before.
At that time my concern was his creatinine level that, according to the nephrologist, was too high at 1.9. That last visit with the doctor had not been quite satisfactory. She had insisted that a 25(OH)D3 level of 22ng/mL was just right for Erik even though that was the level at which Erik had been given Calcitriol otherwise known as 1,25 (OH)2 D3 two years earlier. I was frustrated by the doctor's insistence on her opinion about parathyroid and Vitamin D level without being willing to discuss the subject in more detail.
I was annoyed. I would have liked to have gotten advice about foods that might be helpful in giving Erik's kidney as much of a chance to improve as possible. After that visit I had to leave with my feelings being solidified that Erik didn't matter to anyone but his mother. His medical care seemed again to be a matter of take it or leave it. The doctor had asked the caregiver what medicines Erik was taking, and the answer was that he was getting the same as last time. That apparently was a good enough bit of information. It didn't satisfy me, though. With an upswing in the creatinine level there should be a little more curiosity on the doctor's side.
Two days later we got a phone call from the caregiver saying that Erik had blood in his urine. I was alarmed. We drove to Capitola to see Erik's primary care physician as well as the urologist at the hospital in Santa Cruz, and as it turned out in a case like Erik's that is not all that unusual. We were reassured that Erik's situation was such that the little tinge of red in the bag would hopefully go away.
Meanwhile I got more curious about the medicines Erik was actually taking. One of those was amitryptilin, the other was polyethylene glycol.
Checking into this a little further, it turns out the first drug is an antidepressant that was apparently given not for depression but instead to make Erik sleep. So, now we knew why Erik had seemed so out of it. The other drug was a laxative. I went to some length to find out if there were reasons to believe that it might interfere with kidney function. Neither of the two drugs had anything to do with Erik's kidney failure, it seemed.
It turns out that I found an article about a study done in Taiwan that indicated a potential problem in patients with kidney failure. Upon finding that information I asked the primary care physician if these two medicines could be discontinued. She had absolutely no objection. She had not prescribed them, she said.
The drugs were discontinued and the next day already Erik was much more alert. He smiled and giggled. He made his needs known by pointing to what he needed. He pushed off with his toes on the leg that could reach the floor to turn the wheelchair to the TV set because he wanted to watch Shrek, his favorite movie. Taking the antidepressant away made the difference. Hopefully the polyethylene glycol removal will lower the creatinine level. We'll have to wait a while before we get the lab tests done again. It was gratifying to see Erik in good spirits. There can be joy in the small things. That's the difference. In the end everything depends on whether somebody cares.
At that time my concern was his creatinine level that, according to the nephrologist, was too high at 1.9. That last visit with the doctor had not been quite satisfactory. She had insisted that a 25(OH)D3 level of 22ng/mL was just right for Erik even though that was the level at which Erik had been given Calcitriol otherwise known as 1,25 (OH)2 D3 two years earlier. I was frustrated by the doctor's insistence on her opinion about parathyroid and Vitamin D level without being willing to discuss the subject in more detail.
I was annoyed. I would have liked to have gotten advice about foods that might be helpful in giving Erik's kidney as much of a chance to improve as possible. After that visit I had to leave with my feelings being solidified that Erik didn't matter to anyone but his mother. His medical care seemed again to be a matter of take it or leave it. The doctor had asked the caregiver what medicines Erik was taking, and the answer was that he was getting the same as last time. That apparently was a good enough bit of information. It didn't satisfy me, though. With an upswing in the creatinine level there should be a little more curiosity on the doctor's side.
Two days later we got a phone call from the caregiver saying that Erik had blood in his urine. I was alarmed. We drove to Capitola to see Erik's primary care physician as well as the urologist at the hospital in Santa Cruz, and as it turned out in a case like Erik's that is not all that unusual. We were reassured that Erik's situation was such that the little tinge of red in the bag would hopefully go away.
Meanwhile I got more curious about the medicines Erik was actually taking. One of those was amitryptilin, the other was polyethylene glycol.
Checking into this a little further, it turns out the first drug is an antidepressant that was apparently given not for depression but instead to make Erik sleep. So, now we knew why Erik had seemed so out of it. The other drug was a laxative. I went to some length to find out if there were reasons to believe that it might interfere with kidney function. Neither of the two drugs had anything to do with Erik's kidney failure, it seemed.
It turns out that I found an article about a study done in Taiwan that indicated a potential problem in patients with kidney failure. Upon finding that information I asked the primary care physician if these two medicines could be discontinued. She had absolutely no objection. She had not prescribed them, she said.
The drugs were discontinued and the next day already Erik was much more alert. He smiled and giggled. He made his needs known by pointing to what he needed. He pushed off with his toes on the leg that could reach the floor to turn the wheelchair to the TV set because he wanted to watch Shrek, his favorite movie. Taking the antidepressant away made the difference. Hopefully the polyethylene glycol removal will lower the creatinine level. We'll have to wait a while before we get the lab tests done again. It was gratifying to see Erik in good spirits. There can be joy in the small things. That's the difference. In the end everything depends on whether somebody cares.
posted by Birgit Calhoun at 12:03 AM
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