Tuesday, June 2, 2009

Getting harder to breathe

I've been having more episodes recently where coughing spells send me into episodes of gasping, making it hard to catch my breath. I can feel my heart pounding, which starts a cycle of increasing anxiety and furthering the breathing difficulty. The hospice nurses have suggested increasing doses of ativan, morphine, and cough medicine, which seems to help. I was so tired from coughing all morning that I slept for about three hours in the afternoon, so now it's after midnight and I'm not quite ready to go to sleep. Still, today was definitely better than the weekend.

Kathy was here this morning to check me out (she had heard that I'd had a rough weekend). I probably should have talked to her about changing hospice providers, but it felt awkward, so I didn't. I did call Lauren, the manager at the new hospice, to initiate the changeover, and then got a call from the manager at the original program, who tried to guilt-trip me into staying, but of course ended by saying that they would be helpful in making the transition. I got another call from Lauren, who said that they would have their vendors deliver all the equipment before the old equipment was removed, but that everything should be shifted over by Wednesday. And the old hospice called to remind me that I am still officially their patient, so that if I need any emergency services until then I should not hesitate to call.

Laurel was here a good part of the day and got all the laundry done. I haven't had any more episodes of incontinence, but I discussed it with the new hospice, and they said they would provide some incontinence supplies for me to try. It seems to happen when I start gasping and lose the ability to tighten my muscles.

I've been feeling blue and scared. Kathy said that these episodes of gasping and heart pounding are an indication that my heart isn't getting enough oxygen, so I worry about my heart just giving out. It is definitely clear that I'm continuing to get weaker. I want to be able to continue to go out and do enjoyable things, despite the results of expending the extra energy.

Oddly, in the middle of everything today I got a call from a new case manager at United Health Care, who started to ask me about my symptoms and medications, but who clearly knew nothing about United's denial of my hospice care benefits. When I told her, she promised to look into it; I said that it was quite clear that the left hand didn't know what the right hand was doing!

Julie and I finally went through my bills and she took most of them to pay (I did the credit cards, which I already have on-line accounts set up for). We still have to pick a cremation provider--I want to have that pre-paid so there's no hassle when the time comes.

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