Monday, November 26, 2012

Day 163 - burden of care

Today's big recovery news is that I tried out Planet Fitness again. Last time I was there, I had to tell the bikes I was 70 to get a work out I could tolerate. This time, it was 75. On the other hand, I am still quite anemic. I hope to go back frequently and hopefully improve so that I can tell it my real age. The astonishing thing is the low quality of TV programs. There were three TVs I could see from where I was. One had a show focussed on finding the ideal wedding gown for women. OK, that's boring. "You can see the slip," "I'll alter it for you," Now, Sienna is coming back to see her altered wedding gown. Will it meet her expectations? Families arguing over whether or not a dress looks good. Geez, get a life. Another seemed to be a comedy show where there were two fake newscasters, a man and a woman. The woman kept saying things the man didn't like and he kept punching her. OK, not even remotely funny or even acceptable. The third one was a dramatization of a murder investigation and then a re-enactment of the murder once they got the guy to confess. Mmm, not really what I want to watch either. The commercials were out of sync so I mostly watched those although they weren't a whole lot better. Next time, I'm taking my ear buds and listening to something on my phone.

The other recovery news is that my labs were good enough that I can stop all my prophylactic meds. My daily pill count has just gone from six to one. This is excellent news. I can understand how people just get sick of taking all those pills. Sometimes I would just not feel like taking them and would find that I had procrastinated myself into the afternoon for my morning pills. It's funny how that works because really, how big a burden is it to open four bottles and down the pills? Every single day. Actually, twice a day for some pills. One of the biggest things I have learned from this leukemia experience is the burden we impose on patients. A lot of what we do really doesn't *seem* like a big burden and yet doing it every day got to feeling like a burden sometimes. Then it would stop feeling like a burden for a couple of weeks and then I'd usually get a break. Re-chemo, restart the meds, a week or so later it would feel like a burden again.

There is a story I have told a few times (maybe here, sorry if I'm repeating) about how once the nurse was doing vitals in the middle of the night on me and then she said, "as long as you're awake, let's do your eyedrops." My participation in "doing my eyedrops" is to lie on my back and open my eyes at the right moment so the drop flows in. It's really not hard, but I felt like crying. I really did not want to be messed with any more at that point; vitals were enough; let me go back to sleep. I didn't cry (the eyedrops would have had to be redone if I had) and I did submit to the eyedrops and soon after I was back asleep, having learned a lesson (hopefully).

The rest of today was spent weaving, reading at the coffee shop (hospice stuff) and chauffeuring an eleven year old around. A very nice day.

I also finished the most recent JAMA (11/21/12) which has a nice article in it about non-pharmacologic treatment of dementia behaviors--nothing earth shattering, but nice to be reminded of them. Worth skimming a/o reading if one takes care of patients with dementia (soon all of us except pediatricians will probably). There was a surprise: a randomized trial of daily sedation interruption was negative--did not decrease time to extubation. This was a surprise because previous trials have been positive. I remember the first trial well; it was a big deal and somehow was such an appealing intervention to me that I was happy it worked. Now, maybe we're losing our enthusiasm. There were also negative trials of citicoline and TBI and another on fish oil and post-op afib. For a while fish oil was this magical fabulous substance; now we're really accumulating negative trials of it in various indications. I think it still lowers triglycerides. The last original research article was interesting: the association between online patient access to clinicians and use of clinical services. It turns out that in the Kayser System in Colorado, people who had access to their medical records on-line used more medical services (including ED, office visits, telephone, etc). It wasn't the greatest trial because it looks like it was a convenience sample of people where those with access to their records were those who *chose* to turn that feature on--it's not clear from the accompanying text, but I think that is what they were saying. It is easy to imagine that those who *chose* to turn on their access to an EMR would be very different from those who chose not to.

For today, I wish for continued recovery for me. For you, I wish for recovery if you need it, and, really, who doesn't?

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