Medical Journal: Introduction

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.

Medical Journal: 8/5/18

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.

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.

Medical Journal: 8/9/18

Mostly good news.

Dr. Sanfilippo, the radiation oncologist, looked at my radiation history. I had a cumulative dose of only 25 gray of radiation (that’s 2500 rads, if you’re old-fashioned), which he considered modest. No need to spread out the treatment series to reduce side-effects. Yesterday they made the mask I’ll be wearing for the treatments; it looks like a cross between a fencing mask and a death-mask from a medieval tomb sculpture. Also got a tiny tattoo mark so they can aim the beam; remind me never to get an actual tattoo.

Treatments start a week from Monday and run five days a week for a total of 28 sessions, so into late September. Met with the nutritionist who works with the radiation folks; she wanted to make sure I got lots of different nutrients and at least 80gm./day of protein. She had a different theory than Dr. Bomback, the nephrologist; she thinks that to the kidneys all proteins are equally burdensome, while he specified red meat, shellfish, and poutry as much more work for the kidneys than other protein sources. (The fact that different medical experts, especially in different fields, can’t agree on reasonably basic questions, and that there’s no strong drive to resolve those disagreements experimentally, is something I got used to the last time I went through this.) Also met with a skin-care nurse who told me all the things I needed to do and not do to prevent skin problems at the radiation site. Not too burdensome.

This morning I saw Dr. Sulica, the ENT surgeon. Given that there was some risk that the tumor couldn’t be excised surgically because of its positioning, he agreed with the view I had already formed that, even without the heart issue, it looked like a better bet overall. He’s not entirely confident that killing the tumor will cure the cough, but that’s an inconvenience rather than a real problem. He scoped the throat again and reports that the tumor still looks well-contained “not at all likely to be a bad actor.” Perhaps unsurprisingly, Dr. Sulica is somewhat less sanguine about radiation side-effects than the radiation oncologists are; he thinks there is some risk of damage to the voice. He pointed out that most of the bad stuff happens months or years after the radiation treatment, so the radiation folks never see the damage and continue to think they aren’t doing any. For example –and this was complete news to me –he thinks it very likely that the heart problem is a side-effect of the previous set of radiation treatments; apparently that’s now a known risk, though it may not have been in 2000. On the other hand, interventional radiology has gotten more precise, he said, “less like a sledge-hammer.” On the other hand, all of the risks are fairly low probability, and most of them arrive only with some delay. So, all things considered, radiation seems like the better course.

Dr. Sulica agreed with my observation that it’s strange that that expensive piece of radiation equipment works the day shift weekdays only. It would be much less disruptive to my life if I could get some of my treatment evenings and weekends. He pointed out something I hadn’t considered, which is that in addition to the economic question there’s a clinical question. “Tumor biology must be highly unusual if it respects not only weekends but holidays.” I’d assumed the idea was to spread out the dose to minimize side-effects, but apparently there isn’t any actual science supporting the idea of five-day-a-week treatment as opposed to seven days. The first time I heard the phrase “evidence-base medicine” I wondered what other sort of medicine there might be; now I understand that many of the healing rituals of our tribe are based on folk-wisdom rather than anything resembling science.

One advantage of radiation over surgery is that I don’t have to hurry about getting the cardiac issue diagnosed and treated, because I don’t need to be cleared for anaesthesia in the short run. Of course it has to be dealt with eventually, if only because I’ll need a strong enough heart to handle a general anaesthetic for the kidney transplant. A nephrologist friend I talked to suggested a couple of options for doing cardiac catheterization with little or no contrast, which in the best case would mean no additional kidney damage at all, and wouldn’t involve starting on dialysis before the catheterization (and then being committed to dialysis from then on). I’m going to ask Dr. Weiss, the internist, to find a cardiologist willing to take that approach. Still cheerful and –to all appearances –healthy.It’s terminally weird to be dealing with all this heavy-duty medical stuff without actually feeling sick, but for now I’d rather have the weirdness than the symptoms.

Medical Journal: 8/10/18

Talked to Dr. Weiss, the internist. He agrees with Dr. Sulica’s suggestion that the heart disease could be a side-effect of the previous radiation treatment. Likely diagnosis is atherosclerosis. Needs to be dealt with, but in the absence of current symptoms we can be patient. Suggested I go back on a statin, which I’d discontinued since my cholesterol numbers were OK and I was worried about short-term memory effects. Agreed with Dr. Bomback that I should cut back my allopurinol dosage from 300 mg. to 100 mg., to reduce the kidney load. I suggested that –since I hadn’t had a gout episode in more than a decade and was now on a low-meat diet –we consider dropping it entirely, but he thinks cutting back is enough until we see if those symptoms come back at the lower dose.

Next question was whether it’s possible to get the heart diagnosed without going on dialysis first. My friend Dr. Susie Lew, a nephrologist at GW, tells me there are ways of doing catheterization with little or no contrast, and with other preparations to minimize the kidney burden; in the best case, the kidney-function measurements don’t move.

That discussion led to my first health-care-policy insight of this episode. It turns out that New York State does very careful tracking of the outcomes of some surgical procedures. That sounds like a reasonable venture in quality assurance and consumer protection. However (there’s always a “however” in these things) that means that cardiologist who does a catheterization after which the patient needs dialysis gets a black mark on his or her record. On the other hand, if the patient is started on dialysis before the catheterization, then it doesn’t count as a bad outcome. Conclusion: We should look for a cardiologist in New York willing to run the risk, but be open to the possibility of going out-of-state.

Footnote: Some of the responses to my first email –for which I’m grateful –suggested to me that the medical picture I’d painted was overly grim. There’s no doubt that I’m what’s called an “interesting” case, but as far as I can tell I’m more likely than not to be alive and reasonably healthy ten years from now.

Medical Journal: 8/12/18

Met with Dr. Sanders, the pulmonologist, who saw me way back when we thought my cough might be a mycobacterium avium intercellular infection and who figured out from a CAT scan of the chest that it wasn’t, then sending me to Dr. Sulica, the ENT, who finally diagnosed the carcinoma.

(I know, you can’t tell the players without a scorecard. I’ve been extremely impressed with the intelligence and energy of the physicians I’ve been seeing in New York; I got some excellent care in L.A., especially from my oncologist, Dr. Emmanuelides, but overall the docs I saw were a little bit too laid-back and not as decision-theory oriented as I would have liked; when Dr. Weiss told me that he wasn’t completely reassured by my first, negative stress test because that test is only 80-85% sensitive, I knew I was playing in a different league. It would be wrong to notice the high prevalence of (((a particular characteristic))) among the people treating me in New York, so I won’t mention that as a possible explanation.)

I brought him up to date; apparently my Columbia Presbyterian records (from my nephrologist and the radiocardiology folks) aren’t transparent to the Weill Cornell system. I’m hoping that won’t be a problem for the transplant team at NYU Langone. He thinks the cough will resolve once the tumor has been burned out. When I explained the difficulty of finding a cardiologist to do a cardiac catheterization without putting me on dialysis, he looked at the PET results and said “Are you considering a bypass? This looks as if it could be managed medically rather than surgically, but you’re not currently on any of those drugs.” He gave me the name of an interventional cardiologist, Dr. Dimitry Feldman. I’m going to pass that suggestion along to Dr. Weiss. If it’s right, that would be extremely good news under the circumstances.

Medical Journal: 8/20/18

Just heard back from Dr. Weiss, the internist. He’s all for medical management of the cardiac issue once we know what it is, but he’s pretty sure it will take an angiogram or the moral equivalent to make a definite diagnosis. “Looks like three-vessel disease. If you’re 80% restricted, medical management should work. If you’re 99% restricted, you need to be re-vascularized.” He will send the chart to the cardiologist Dr. Sanders recommended and ask him what ought to be done. That might mean a low-contrast angiogram that wouldn’t require putting me on dialysis first. Fingers crossed.

First radiation treatment today. Other than the fact that the mask shrunk a little bit as it dried and is now tight around my nose, no discomfort at all. That was the predicted result for the first couple of weeks. Then things might, or might not, get hairier; apparently there’s almost no risk of something really hairy.

I’ve been getting lots of notes from friends, and they’re greatly appreciated. Despite what I thought was a reasonably optimistic prognosis, a number of you were very distressed; that wasn’t my intention. Those of you who went through this with me last round know that these notes aren’t the least bit sugar-coated; when I’m actually suffering, or when the news is bad, you’ll know about it. So when I say I’m cheerful and that the outcome is likely to be that I come out of this in reasonably good health, you can take that to the bank. If I thought the country was as likely as I am to be in good shape five years from now, then I’d really be a happy camper.

Medical Journal: 8/22/18

Found a brave cardiologist willing to try an angiogram without starting me on dialysis first: Dr. Dmitri Feldman, the one recommended by Dr. Sanders. Apparently there’s a version of an angiogram that uses very little (<30cc.) contrast medium. Somewhat weirdly, it appears that the first time I’ll meet Dr. Feldman is Monday, when the procedure is scheduled. I’m going to check in with Dr. Bomback, the nephrologist, to follow up on Dr. Lew’s suggestion of taking 600mg of n-acetylcysteine twice a day the day before and the day of the procedure.

The plan is to have me in and out of the hospital within about five hours, suggesting that the procedure isn’t all that drastic. But I’ve been surprised before. Fingers crossed.

Medical Journal: 8/23/18

Sent a note to Dr. Bomback, the nephrologist. He’s happy with the low-contrast cath, doesn’t think we need to put a dialysis plan in place in advance. That sounds like good news. Wants labs at 2 and 7 days post-cath. Says that the efficacy of n-acetylcysteine as a protective measure wasn’t demonstrated in the studies done on the topic. Agrees that it couldn’t hurt, but says NAC is extremely hard to get; apparently the supply is limited and mostly reserved for cases of acetaminophen poisoning. Recommends hydration before and after the cath; I think that was already the plan.

I’m supposed to get a pre-op call tomorrow.

Medical Journal: 8/27/18

Angiogram completed. Further detail to follow, but the bottom line is that the result was unexpectedly favorable: no significant arterial blockage, no need for a stent or a bypass. Some cardiomyopathy; should respond well to medication. The heart is unlikely to be a barrier to transplant surgery when I need it.

The procedure itself was time-consuming but not painful: about as bad, I’d say, as having my teeth cleaned. No narcotic, and only 1 mg. of Versed (which I don’t recall feeling subjectively, but the cardiologist says I drowsed off). Ergo, no after-effects; I left home at 7:20, it’s now 4:45, and I’m back home and feeling normal.

The test was done with only about 20 ml. of contrast, where 100 ml. would be typical for an angiogram. That doesn’t guarantee that the kidneys didn’t take a hit (tests are scheduled for Wednesday and next Tuesday) but the odds are much, much better than they would have been. If you were holding your breath –as I was –you can now exhale.