The good news is that I’m now cleared for a transplant, after a –yecccchhhh –colonoscopy. They found eleven polyps, the largest 12mm (in the mid-sigmoid colon), another 8mm, and the rest 4-6 mm. Biopsies should be back tomorrow. Given the number of polyps, Dr. Rubin wants to see me in a year to decide whether I need another colonoscopy. Here’s the full report.
Even better news: one of my potential donors passed initial screening and will be coming to NY a week from now for further testing, including a test where a donor blood sample is mixed with a sample of my blood to see what happens. (This sounds seriously weird. Does the person doing the test have to recite a spell? Do the samples have to be stirred counterclockwise and left-handed?)
In addition, there’s a new back-up volunteer. So I’m optimistic that someone will make it through the process.
The not-so-good news is that my exercise capacity, which had been expanding, has contracted again –the mile walk I used to be able to do is now out of reach, and even a couple of blocks is an effort. On two occasions it’s been hard to breathe deeply lying down at night. In each case a dose of isosorbide dinitrate made the problem go away. On two other occasions moderately vigorous activity left me gasping for breath for a couple of hours,with a blood pressure around 165/95 and a pulse around 88. I’m now on 30mg of that a day, and have also gone from 25mg of hydralazine once a day up to twice a day. If things don’t improve soon I’ll go back to Dr. Weiss.
When I saw Dr. Sulica a couple of weeks ago, I complained about a persistent runny nose, and he prescribed ipropropium bromide .03% nasal spray (23 micrograms of the active agent twice a day in each nostril) which handled the problem nicely.
I still have a nasty, productive cough, which may be a lingering pneumonia. A second chest X-ray showed some remaining mass in the lung but because the X-rays were done in different facilities there’s apparently no way of having them read together to measure improvement. Dr. Weiss wants a third X-ray in a couple of weeks. In the meantime, my voice has stopped improving; I’m audible but hoarse and ragged, and if I talk too much the voice starts to go.
My appetite has returned somewhat, which is presumably a good sign but not a good thing; I’m up a dozen pounds from my low of 227. I’m now being more deliberate about restricting my intake, in hopes of getting back below 230 before the surgery. Dr. Bomback reports that my potassium is borderline, so I’m watching that as well. Unfortunately, that means no more grapefruit, which I think helped with the weight loss.
Creatinine is back up to 6.2; that’s about where it was four months ago, but Dr. Bomback wants the transplant done as soon as possible.
The colonoscopy had its comic elements. Dr. Weiss had referred me to Dr. Moshe Rubin, who is apparently a star in that field. When I called to make the appointment, I’m pretty sure I said it was to get cleared for a kidney transplant, but Dr. Rubin’s office staff didn’t pick up on the fact that I was a complicated case, and apparently Dr. Rubin hadn’t reviewed the chart until I was actually on the table. He expressed some annoyance that no one had warned him about the complexity; he would have wanted to meet with me and examine me first. But he decided the procedure would be reasonably safe, and went ahead.
Instead of the fentanyl/Versed combination I’ve had before, the anaesthesiologist at the colonoscopy center used a sedative called propofol (190 mg.) Either the stuff is very fast-acting or it causes some amnesia, because the last thing I remember before waking up was the anaesthesiologist saying “We’re going to start running the sedative now.”
In the conversation when Dr. Rubin was trying to figure out whether I was in good enough shape to tolerate the procedure, I seem to have given him the –correct –impression that I was both interested in learning about the technical details and unlikely to freak out. As a result, about midway through the process the propofol was discontinued, and when I awoke I was looking at a screen with various images of my large intestine. Dr. Rubin started to explain what he was doing and what he was finding, but with the instrument still in me I was too uncomfortable to pay much attention. When I said so, they put me under again until it was all over.
As usual, the prep was the worst part of the process, and even that wasn’t nearly as bad as it was a dozen years ago; there’s a new prep medicine called Clenpiq, taken in only two doses starting at 6pm the evening before the procedure, after a single day on clear fluids only. It didn’t even taste especially awful. Recovery was reasonably rapid,and I didn’t need any medication afterwards.
Well, at least it’s never dull. I’ll try to be more diligent about keeping you updated.
In the meantime, everything else in my life is going very well. I’m getting some work out the door, and if the quality has declined I haven’t noticed it and everyone else has been too polite to mention it. I think I’ve persuaded a star Ph.D. student about to finish up at the RAND graduate school to join the Marron/BOTEC team; I’ve known him for a long time, and I’m confident that if I’m out of action he can pick up the slack.