Thursday, March 5, 2009

Weaker and sicker

I slept really soundly last night, getting some badly needed rest, waking up a bit after seven, and got out of bed to go to the bathroom (which is very close to the bedroom). It was one of those times when I didn't realize till I got out of bed how weak I was, and I started gasping for breath. When I sleep, I wear the mask for the bi-pap machine, but to move around I need to switch to the nasal cannula, since the hose for the bi-pap is only about three feet long, while I have fifty feet of tubing for the oxygen tank. When it gets really hard to breath the mask is very helpful, so Marty helped me to get switched back, but I was still having a lot of trouble breathing. I called hospice and was told that all the nurses were in a meeting but that Kathy would call me as soon as it was over (she told me later that if I should ever feel that it was an emergency, I should tell whoever was covering the phone that I needed to speak to her right away, which is a good thing to know).

It was scary to feel that short of breath, even with the mask on. Marty was holding my hand and trying to comfort me, but I really was terrified. Not being able to breath is such an awful feeling. Somehow, with all the gasping, I also soiled the bed, which was humiliating and made me feel even more awful and helpless. A couple of weeks ago Kathy brought me a package of disposable bed pads, which I was using for a few days, but then stopped using. I got myself cleaned up and Marty put a pad over the mess, and eventually I calmed down, and I guess at some point fell back to sleep, because I was asleep when Kathy arrived.

Yesterday she had wondered if perhaps I had a touch of pneumonia. I didn't think so yesterday, but this morning I had a pain in my lung when I breathed, which I'm familiar with from previous bouts of pneumonia, and when Kathy took my temperature it turned out that I was running a fever as well. She called Dr. Meyer to get a prescription for antibiotics, and started me on another medication to dry up some of the secretions, which she said I should take every four hours along with the cough medicine.

I've taken several naps today, and by mid-afternoon was starting to feel a little bit better, helped by a visit from my friends Bob and Jenna. It was great to sit with them and talk about all kinds of things, which took my mind off how bad I was feeling. Marty is so right that visitors are always a good thing, even on a day like today when I didn't feel up to getting out of bed. I've managed to eat a little bit (some cinnamon toast and tea while Kathy was here, and some whole wheat pasta and butter late in the afternoon), but in general food doesn't appeal to me right now. I took my arthritis medicine and my prednisone, but skipped the rest of my pills, which are mostly vitamins and supplements.

It's evening now, and, as usually happens around this time of day, I feel better and stronger. Marty went out for a couple of hours in the late afternoon but should be back soon. I'm hoping that a few days of antibiotics will knock this out so that I'll be a little stronger. Last night after dinner I was able to clean up the kitchen, loading the dishwasher and stuff like that, so I just wasn't expecting to be so weak when I first got out of bed this morning. When I'm aware that I'm weak I can make myself move extremely slowly so that I don't over-exert; it's frightening that just taking a few steps from the bedroom to the bathroom can be so stressful.


  1. Thank you for posting thru everything you are facing. It is helpful to read and understand your experience as a patient even though I have worked with thousands of hospice patients. The window into your world can help many.

  2. Dear Judi,

    I continue to be a regular reader of your blog, although I've only commented once before. A couple days ago I sent a note letting you know I'm looking forward to hearing your voice on David Oaks' MindFreedom Internet Radio program tomorrow at noon, my time. When I tried to send I did something wrong and lost the entire message. I'll try this again.

    From southern Colorado where the Sandhill Cranes are passing through on their annual migration . . .

    Mary Van Pelt