Author: Mark Kleiman

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.

Friends:

As some of you already know, I’ve been having some health issues, and they’re getting more rather than less complicated.

Last time I was sick, Gary Emmett suggested that I set up a listserv, which allowed me to keep friends up to date without explaining the same set of symptoms over and over, and also turned out to be a very useful journalling exercise. But I got the sense that some recipients found the barrage of clinical detail oppressive.

So this time I’m going to use a “pull” approach rather than a “push” approach.

I’ve put a Word file on a system called BOX.

I’ll update the file when there’s news, and you can check in as often as you’re curious. (If you prefer to be alerted every time there’s an update, let me know.)

I don’t want to make this public, but I’m not keeping it a secret either; if you know someone you think would like to be kept up to date, feel free to share the link.

In the meantime, I’m feeling perfectly well, productive at work, and well taken care of.  Happy to talk if you’re in the mood to talk; right now I don’t need anything I don’t have.

I’m going to try something unusual for RBC: publishing something more personal than policy-oriented.

Here’s the background:

Sometime in 1999 I got seriously ill, but my physicians didn’t have a clue as to what it was. My old friend Gary Emmett (after making what turned out to be the correct diagnosis based on nothing more than a telephone call) suggested that I could spare my voice and my emotional energy by typing up notes about what was happening to me and emailing them do a list of friends. That would avoid starting every   conversation with a recitation of symptoms. As the weeks progressed, the notes turned into something like a personal journal. A number of friends said they found it fun to read; after at long last I got a diagnosis (of Hodgkin’s Lymphoma) and been cured, I thought about publishing the email archive under the title The Dr. Hodgkins Diet: How Lost 40 Pounds Without Ever Going Hungry, but failed to find a publisher.  

Here’s a somewhat modified version of the longest of those notes, about fear of dying, and another reflecting on the mind-body problem in medical care.

Flash forward 17 years. I got sick again, this time starting with a persistent cough that turned out to be a cancer on the vocal fold plus (apparently unrelated) declining kidney function. By the fall of last year,  my nephrologist gave me the bad news: within no more than a year, I was either going to need a kidney transplant or have to go on dialysis. I didn’t keep this a secret from family, friends, and co-workers, but I didn’t see any point in shouting it from the rooftops. Still the number of people who knew was large enough that I decided to revive the medical journal, for those who wanted to follow the play-by-play.

Now that I’m through the worst of it – thanks to a brilliant surgical team and my sister Kelly, who donated a kidney – and in remarkably good shape, considering, I’m going to take up the suggestion of some of the readers of those accounts and publish that journal.  Having once again failed to find a commercial outlet, I’m going to take advantage of my RBC connection to put it all up here, as a serial, with a post each day covering a single update (which came about twice a week). The first installment is below. In addition to whatever human interest it might have, a patient’s-eye view might be of some value to people engaged in health care and healthcare policy.