Medical Journal: 8/6/18

All sorts of developments. Kidney function is heading south rapidly. Now down to about 14% of normal. Estimated to need either transplant or dialysis within a year, possibly sooner.

That now seems like the most likely explanation for my loss of appetite, which I’d thought was caused by whatever was causing my persistent cough. I’m down 25 pounds; could stand to lose another 20, but I’m told that’s not advisable right now. Hard to express how liberating it’s been to have what for normal people is a normal appetite. I thoroughly enjoy my food, but I don’t feel the need to eat very much of it. Set up for a transplant evaluation at NYU Langone with a top transplant team. Three (!) donors have already volunteered, which leaves me gratefully stunned. Prognosis favorable: >95% that the organ will still be working five years from now, with an expected useful life of about 20 years. (As the nephrologist put it, “The kidney is a good bet to outlast you.” First year will involve a lot of immunosuppressives; after then it will just be twice-a-day doses of two drugs, and some increased susceptibility to colds (which I almost never get). I’m also told I need to get all my immunizations up to date before I go on immunosuppressives.

I’ve had a severe and persistent cough for almost two years now; that finally got diagnosed last month. I was scheduled for surgery to excise a small (1 cm) and apparently localized squamous-cell carcinoma on the left vocal fold. (Unfortunately, that’s the one that still works; the other has been paralyzed since my bout of Hodgkins.) That prognosis, too, was favorable, and the procedure not too drastic. But I needed cardiac clearance before any anaesthesiologist would put me under. (Apparently quite deep under for this sort of surgery.) A left bundle-branch block (no, I don’t know what that means, either) prevents an EKG from being interpretable, so they tried a chemical stress test. That test was negative, but I reacted abnormally strongly to the chemical stressor. My internist wanted to do an angiogram just to confirm that the heart was OK and would handle the surgery, but the nephrologist said that with my current numbers an angiogram had about a 30% chance of putting me in frank kidney failure.

So the internist ordered a PET stress test (with a different chemical stressor) instead. That went very smoothly, with virtually no side effects. But the results were bad: something was seriously impeding blood flow in the heart when the veins were dilated. (Consistent with the reduced exercise tolerance I’d been attributing to the cancer.) So surgery isn’t an option without doing a cardiac catheterization first, which would require that I go on dialysis immediately (first hemodialysis, which is seriously disabling, then the less problematic peritoneal version you can do at home while you sleep). The ENT surgeon suggested that I check in with a radiation oncologist to see if the tumor could be handled that way, without using any sharp objects. Just saw him today, and the answer is “Yes.” He wants to see my previous radiation record, but even if I got a lot of it that just means he’d have to space out the dose. Base case is a painless fifteen-minute procedure five days a week for about five weeks, with no side effects at the beginning but likely hoarseness and some sore throat toward the end and in the following week. Unlike the surgical option, no risk of ongoing damage to the voice. I think if I’d known this up front, I would have chosen radiation over surgery; I thought there was significant cancer risk from radiation, but apparently not.

In the meantime, I got a call today from Columbia Presbyterian, telling me that I was scheduled to be admitted today to have a dialysis catheter put in tomorrow and a cardiac cath Wednesday. All of that was news to me; there seems to have been another breakdown in communication. Apparently HIPPA makes email unusable for medical stuff, and voicemail just isn’t an adequate substitute. Will still need a cardio workup in the fairly near future to figure out what that issue is; the PET results suggested to the internist that I’m at some significant near-term risk of a heart attack. (My father had a massive one at age 60, so this is dismaying but not entirely surprising.)

I remain hopeful and cheerful; for whatever reason, I don’t obsessively worry about medical stuff in the way I do about career stuff or politics. But we’re definitely in advance-directive, medical-power-of-attorney, do-you-have-your-will-in-order territory, and I’m doing some serious what-if planning to try to keep both the Marron Crime and Justice effort and BOTEC in operation even if I’m not.