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: 8/9/18

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: 8/6/18

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: 8/5/18

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: 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.

The opioid crisis and the border Wall

The states hardest hit by the opioid crisis are a long way from the Mexican border. Trump’s Wall remains a solution in search of a problem.

One of the sillier talking points in the Wall debate is that we need a physical barrier to keep opioids from coming into the country from Mexico.  Various commenters have pointed out that: (1) The fentanyls, which are the fastest-growing segment of opioid use and overdose deaths, mostly come directly from China; and (2) What does come across the U.S./Mexico border comes through overwhelmingly by common carrier at ports of entry; it isn’t backpacked through the desert by immigrants.

A point I haven’t seen made, and didn’t know about until Kevin Drum posted this graph based on data from the CDC’s Morbidity and Mortality Weekly Report, is that the crisis isn’t concentrated anywhere near Mexico. All of the hardest-hit states in terms of opioid mortality rates are east of the Mississippi and north of the Tennessee, about as far as they could be from the Rio Grande. Of the four states that actually border Mexico, New Mexico and Arizona are in the middle of the pack, while California and Texas rank 45th and 47th.

So Trump’s Wall remains a solution in search of a problem.

Liveblogging the midterms, Part IV

I might not have to slit my throat after all.

The Senate is a lost cause, and the Georgia and (probably) Florida governorships have gone the wrong way, but a couple of good results in the House have turned the 538 model to a 2/3 chance of Democratic control, while the NYT reports >95% and predicts 231 Democratic seats (+34) based on a popular-vote margin of almost 9.5%.

That means two years of investigating Republican misconduct, and in particular Adam Schiff having Mueller’s back.

Now if we can just take out Kobach and Walker …

Kobach has now officially lost. That makes up for a lot.

And 538 is now calling it 90% likely that the Democrats take the House.

Jared Polis has been elected Governor of Colorado.

Spanberger beat Dave Brat in Virginia.

 

Liveblogging the Midterms, Part III

Well, Ollie, ain’t that a revoltin’ devlopment!

I’ll raise my hand now and admit that I was expecting the Democrats to outperform their polling. Apparently, no such luck. Looks as if racism was a good strategy for the GOP.

Donnelly is losing Indiana; both Florida races are too close to call; no surprising House pickups so far; a couple of promising candidates have lost. And if we had to win one possibly marginal Senate seat, did it have to be that crook Menendez?

538 now projects only a 60% chance that the Democrats will take the House, with an expected gain of 25 seats, and expects a net gain of two Senate seats for Republicans.

8:49: HAP–I suppose it’s a good thing that Menendez was reelected in NJ. A real embarrassment. I know it’s a good thing that Florida has voted to restore the voting rights of more than 1 million former felons.

Less than 100,000 vote margin in Fla gov race. Republicans well-positioned to win both Florida races, as Mike Grunwald warned months ago.

O’Rourke doing well in early voting, but it’s hard to know.

8:54. Republicans picked up Indiana Senate seat.

Democrats seem to be under-performing overall polling numbers. Not a great night so far.

8:58 MSNBC projecting that Democrats will 224+/-8, with 65% chance of winning majority.

8:59: Manchin held on….

9pm: Cruz has slight lead, but too early to call. Abbott held on in governor.
Wis governorship too close. Tammy Baldwin reelected.

9:04 Marsha Blackburn won in Tennessee. Gillum has a big hill to climb in Florida.

538 gives Democrats 56% chance of taking House. Looks like MS will go to a special election.

As depressing as tonight is, Democrats now at 57% probability of taking the House.

Striking that Democrats who ran as Democrats were sometimes disappointed. Democrats who ran as Republicans were also sometimes disappointed. McCaskill voted against Kavanaugh but also expressed anti-immigrant sentiment.

[We are adjourning to the top of the hour.]

Liveblogging the midterms, Part II

7:45 So far, so good. FiveThirty Eight started the night predicting that the Democrats would lose a Senate seat and pick up 35 House seats. That’s now a break-even in the Senate and +45 in the House.

Gillum and Nelson seem to be running about even with each other in Florida, about three points ahead of their opponents with more than half the vote in.

7:58 Now the 528 predictions are back down to R+1 in the Senate and D+41 in the House. Donnelly isn’t looking good in Indiana; he was even-money on PredictIt earlier in the day, but he’s now 4-to-1 against. Apparently the rural counties are coming in hard for his opponent.

First pick-up call of the night: Wexton over Comstock in VA-10. That was expected.

8:24 Doesn’t look good for Gillum right now. Wow. Florida looks like a nail-biter.

CNN continues to over-interpret early results without telling us where early votes are coming from.

Charlie Baker wins in Mass reminder that socially-moderate Republicans could be very competitive in blue states, if GOP primary electorates would nominate mainstream candidates

Wolf Blitzer yells a lot. If he were on Twitter, he would be all-caps. These early results would be so much more informative if they were embedded in some sort of predictive-analytic model based on prior state patterns.

8:25 No surprise: Pritzker and Hogan win governorships.

8:26 James Carville says this will not be a Democratic wave election. Seems a little dour.

Starting a new post now.

Liveblogging election returns

The Reality-Based Community
will be liveblogging tonight’s results.

Harold Pollack, Stuart Levine, Mike O’Hare, and I will be live-blogging the midterms. (We’ll be chatting by email, and I’ll be posting the juicy bits here.)

First comment from me: It’s time for Democrats to make vote suppression and elections integrity a campaign issue. The only people that will turn off are the hardcore Trumpist Republicans Democrats were going to lose anyway.

If the Democrats take the House, they can pass an appropriate bill (which the Senate will ignore) and then start tacking it to various pieces of “must-pass” legislation.

6:02

CNN is putting up some exit polling. Overwhelmingly, voters think the economy is in good shape (68-31) but the country is on the wrong track (41-56). That sounds right.

Trump’s job performance among exit-polled voters is underwater, 44-55. That’s pretty close to pre-election national polling.

Opinions of the Republican Party are net unfavorable (43-54, of the Democrats net favorable 50-46).

Generic ballot also has the Democrats 10 points up, also consistent with pre-election polls, or just a tad on the high side.

I’ve always found it bizarre that the networks report raw vote without reporting votes in previous elections from the same precincts, which would make the raw vote interpretable. That shouldn’t require much effort.

Predictably, FiveThirtyEight.com is providing a contrast with CNN’s idiot chatter. Here’s how the thing is done, folks:

6:49 PM

Looking for signs of what’s happening with Democratic incumbent Sen. Joe Donnelly in Indiana? In Bartholomew County, which had 1 percent of the state’s vote in 2016, a bit more than one-third of its precincts have reported. Trump won it by 33 points in 2016, and Donnelly lost it by 8 points in 2012. Currently Donnelly trails there by 9 points, which is close to his 2012 result when he won statewide by 6 points.

If those 1/3 of the votes are representative of the county – a big if – Donnelly is in good shape; he’s only doing a point worse tonight than he did six years ago, when he won by six points. (Still not clear to me why it’s so hard to do straight precinct-by-precinct comparisons.)

Now here’s some cheerful news from Twitter:

@HLWright

On the Kim Davis race in Rowan County, with 12 of 19 precincts reporting:
Davis (R): 1783
Caudill (D): 2172
@heraldleader @BGPolitics

Closing this thread down and starting a new post.