Some good news, and some bad news.
On the bad side: Two of my four volunteer donors have washed out of Donor Boot Camp, one for a pulmonary problem and the other for insufficient kidney function. Especially regrettable because one of them apparently was good immunological match with me. Still have two left; keeping my fingers crossed.
Also on the bad side: My cough isn’t going away, and my voice, which came back to some extent, is now coming and going more or less at random, with no clear trend. It tends to wear down over the course of a day, and any extended talking tends to bring on very intense coughing. There’s also some audible wheezing at bedtime,sometimes loud enough to keep me awake. The sore throat is mostly gone, and I’m no longer constantly chewing cough drops, but Dr. Sulica (the ENT specialist) isn’t making any promises about continued improvement. If the cough continues for another month, he’s going to order another chest X-ray; maybe the zithromycin didn’t cure the pneumonia, or maybe it came back. Or maybe, as he said, I’m simply now a guy with a cough.
All in all, I’m regretting the decision to go with radiation instead of surgery. (Though radiation had one big advantage: it was more or less certain to work, while there was some risk that the tumor would turn out to be unreachable surgically.) My understanding going in was that surgery would, and radiation would not, threaten permanent damage to the voice; that apparently was not the case. Dr. Sulica explained that radiation can damage the salivary glands, leaving thicker, “ropy” mucus. That’s the first I’ve heard about that.
Dr. Sulica scoped me again and verified that the tumor mass had disappeared; he will write the letter the kidney transplant folks wanted, saying I’m officially cancer-free.
Despite the cough, I’m basically comfortable. Energy seems to be returning to some extent; I walked to work (just about one mile) this week, without much strain. Traffic in New York guarantees frequent pauses at traffic lights, so that’s not really a mile of continuous walking, but it’s way more than I could have done even two weeks ago.Stairs are still a big challenge, a big problem if you’re as dependent as I am on NYC subways. I’m learning bus routes as an alternative, which is OK except at rush hour or for long distances.
The kidney transplant folks also wanted a cardiology workup before they’d clear me, so I had a trans-thorasic echocardiogram (quick and painless) followed by a visit with a cardiologist, Dr Tharaon. He was quite upbeat; the TTE showed nothing alarming, and he sees no impediment to surgery.
Dr. Tharaon also explained what a “left bundle-branch block” is; it means that two of the three nerves that drive heart function are out of action. (I thought I’d been told that it was a problem for reading EKGs but without functional significance.) Hethinks a pacemaker would help, and explained that installing one is a fairly trivial outpatient procedure; there’s some doubt whether my current function is bad enough to warrant one. We discussed the problem of theburden Entresto places on the kidneys, and he was impressed that I’d found a nephrologist flexible enough to all me to be prescribed any of it. Once the new kidney is in place, he’s convinced that I can be restored to full heart function.
I mentioned the mistake I’d made in continuing to take isosorbide dinitrate and hydralazine the first day I was on the Entresto, and how great it made me feel. Dr. Tharaon said that made perfect sense, because those two work on mechanisms different from the two drugs that make up Entresto, and the gains are more or less additive. So he wrote me a new prescription for those two drugs, but told me to hold off on actually taking them until he’d checked back in with Dr. Weiss, who had taken me off them when I went on the Entresto. He did so, and sent a note saying that Dr. Weiss had ruled against going back on isosorbide and hydralazine and instead wanted to double my dose of carvedilol (to 6.25 mg. twice a day). No explanation about why; I’ll have to ask Dr. Weiss why the next time I see him.
The only other hurdle I need to jump before the transplant –other than finding a donor –is a colonoscopy (yech!). Apparently the rule is that you need one no more than 10 years old before a transplant, because if there’s any cancer present the immunosuppressives will set it loose. Just my bad luck what my last colonoscopy –which at the time I swore would be my lastcolonoscopy (it’s easily the most uncomfortable and disgusting test I’ve ever suffered through) turns out to have been in 2006. I’m tempted to get the report from UCLA and use White-Out to change the “6” to a “9,” but I doubt I’d get away with it.
My appetite seems also to be back a little bit, which is no doubt a good sign but definitely not what I want right now. Apparently,the less fat I carry into the transplant, the less fat they have to cut through and the quicker the healing process, so I’m hoping to lose some additional weight, and a restored appetite –coupled with lack of stamina for exercise –isn’t going to make that any easier.
Boy howdy, it’s a long road you were on. Also, you are lucky to have such good people around, with useful tips.