Progress has slowed. Voice maybe coming back a little, but still husky and variable; it runs out of steam after a while. Energy, as far as I can tell, not improved at all. Cough is still nasty (and productive) though perhaps a bit less frequent. Throat no longer sore, but persistently scratchy, and I’ve been chewing cough drops constantly. Appetite not noticeably changed, but somehow I’ve gained about seven pounds from my low of 225-and-change.
This week and next I’m seeing all my docs other than the transplant surgeon. Today was Dr. Weiss, the internist/cardiologist.
He’s still upbeat about the heart, but stymied for the moment because any increase in the dose of Entresto would be a threat to the kidney. The problem is mostly cardiomyopathy. Ejection fraction is 42%, which is in the mild-to-moderate range. The narrowing of the arteries is non-obstructive. So the disease should respond well to medication, once I can get on a full dose of medication. I asked about the sudden onset of the problem and its apparent triggering by a dose of Ambien which didn’t bother me once I’d started on the cardiac drugs. Answer: It’s anyone’s guess. Some people have severe symptoms of heart failure with ejection fractions higher than mine, others are asymptomatic at lower fractions.
In the meantime, Dr. Weiss suggested going back on 12.5mg of hydrochlorothiazide to get rid of some water weight. If in fact the energy level and stamina won’t improve until I’ve had the kidney transplant and been able to go on a full dose of Entresto, I’m inclined to try to speed things up, though I’m definitely not looking forward to the year of immuno-compromise that will follow the surgery.
Dr. Weiss suggested the same thing my friend Lowry Heussler suggested in terms of exercise: a recumbent bike. I was able to do about fourteen minutes of interval training, albeit at the lowest resistance level. At the end I was puffing but not panting, and recovered quickly, so it looks as if that’s an amount of exercise I can tolerate. With any luck, I’ll get back to being able to walk the mile to work, and that will make exercise part of my life rather than something I have to get dressed for.
I had attributed my loss of appetite first to the cancer and then to the radiation, but the cancer is gone and the radiation was over a month ago. Sally Satel, who has the same kidney disease I have (IgA nephropathy) and has had two transplants, reports that she started to lose appetite as her kidney function declined, but that it bounced back after the transplant. Since that’s the one symptom that’s a benefit, I don’t actually welcome the prospect.
I’m quite comfortable and sleeping well, but I’m now getting a bit cranky; I’d expected to be feeling better once I had the radiation well behind me than I felt having an active carcinoma, and I’m not.