Medical Journal: 8/31/18

After-action report on Ambien:

Image result for new yorker back to the old drawing board

Feeling reasonably sleepy and comfortable, I decided to try to get off without a sleeping potion. So I took my usual bedtime zinc and magnesium (to prevent cramping), and benzonatate (cough suppressant), 1000 mg. of Tylenol, flushed the nasal passages with saline, then used Flonase in hopes of keeping them reasonably dry over night, spayed the throat with phenol and such on a lozenge, turned off the light, and tried to go to sleep. In the back of my mind was the thought that if I wasn’t worried about sleeping –having the Ambien as a back-up –the not-worrying might let me sleep.

No such luck. The throat was a little bit uncomfortable, and (perhaps due to the Flonase) I kept sniffling and swallowing, and sleep was just not a happenin’ thing. So I took one 12.5 mg. zolpidem (Ambien) extended-release tablet, read for a few minutes to let it start working, and turned off the light again. Mistake! Propped up to read, I was fairly comfortable. But as soon as I got horizontal, I felt queasy: not nauseated enough to worry about vomiting, but distinctly uncomfortable. Sitting up all the way brought the queasiness down to a tolerable level, but when I tried to calm myself down with deep, slow breathing –my go-to approach –I found it impossible. It was as if there was something wrong with the diaphragm and the muscles of the chest; I couldn’t expand enough to get a good breath in, and couldn’t contract enough to force the air out. That left me breathing quickly and shallowly just to get enough oxygen. I tried standing and then walking; I think the walking helped a bit, but only a bit.

Now, this is not a problem I have. Back when my back was giving me trouble, I had some New-Agey breath training. So I can –do, when I’m trying to manage my mood –inhale for thirty seconds and then exhale for thirty seconds, sometimes one nostril at a time. So being reduced to about a two-second inhale-and-exhale was pretty seriously scary, and of course I wondered if something was going on with the heart. I even toyed with the notion ofheading in to an ED, but that seemed like an over-redaction and as likely to make things worse as to make them better. I couldn’t really focus enough attention to read, so I just sat in a reclining chair and breathed for a while. (15 minutes? An hour? Time flies when you’re having fun.) At some pointI fell asleep sitting up –as I had two nights earlier –was down for probably a couple of hours, woke up, seemed to be breathing normally, went to bed, slept well, woke up alert at about 10:30. I still can’t do a full thirty-second inhale –the chest muscles just don’t want to cooperate –but otherwise feel no after-effects.

In the meantime, I’m looking for Plan B as a sleeping solution. If anyone is in the market for 29 Ambien XL in mint condition, no reasonable offer will be refused.

***

3:30 pm. Talked to Dr. Weiss. In retrospect, it might have been better to start with half an Ambien. But given the experience, no point trying it again. Will switch to 0.5mg lorezepam (Ativan), which is short-acting. I’ll start with half of that, and take the other half as booster if I wake up in the middle of the night.

Medical Journal: 8/30/18

Discussed angiogram results with Dr. Weiss:

-No arterial blockage.

-No serious risk of a cardiac event.

-No bar to transplant.

-Possible cardiomyopathy.

He was inclined to wait to start treatment until the radiation sessions were over, but when I said my exercise tolerance was now significantly impaired he agreed that I should start on something now. Identified something he was sure I could take; wanted tocheck with Dr. Bomback about possible kidney risk from ACE inhibitors. Said he’d phone in a prescription, but it didn’t show up at CVS; I left a message at his office.

Wednesday’s lab work came back; creatinine is 5.0, down from 5.9.Apparently creatinine testing is like political polling: enough test-to-test variability to not get excited about a single set of results. Per Dr. Bomback, this doesn’t change his conclusion that I will need a transplant within a year, but it improves the odds that I won’t have to go on dialysis first. Next test scheduled for Tuesday.

Had two very bad nights; as with the last time I had radiation, I have the feeling of something in my throat, and swallowing is slightly uncomfortable. That’s complicated by a persistent stuffed-up nose that’s been with me for a while.

None of this is much of an issue during the day, but it’s enough to keep me from going to sleep. I feel something in the throat, know that I shouldn’t swallow, do swallow, it hurts a little bit, then I’m just worrying and blaming myself for swallowing and worrying without any chance of going to sleep. Worse, I get to sleep, and either the throat discomfort or the stuffed nose is enough to wake me up after an hour or so. Then I feel seriously rotten, with very little chance of getting back to sleep regardless of how tired I feel.

Went to bed about 8pm Tuesday, woke up about 11, never really got back to sleep, and felt miserable. Despite that,I functioned reasonably normally Wednesday. Called Dr. Weiss’s office and left a message, but didn’t hear back.

Wednesday night (last night) I took 1000 mg. of Tylenol just before bed, sprayed the throat with an over-the-counter phenol solution, went to bed, got to sleep, woke up after an hour. I had decided in advance that I couldn’t handle another night like Tuesday, so I took 50 mg. of Tramadol (from an old prescription when I hurt my shoulder).

Tramadol is a weird molecule, with a mix of mu-opioid and serotonin effects, so it functions as a pain-reliever and a mood-brightener. It doesn’t really fit the normal table of milligrams-of-morphine equivalents, but in terms of dosage recommendation 50 mg. replaces about 5 mg. of oxycodone.

It wasn’t so much that I expected it to make the throat hurt less; I hoped it would make me notworry about how the throat felt and get me to sleep. (Truth be told, that’s also true of the pure mu agonists for me; they don’t reduce pain perception so much as they reduce caring about the pain.) So it happenedin this case; it took about 90 minutes for the effects to kick in –a fairly unpleasant 90 minutes –but then I went to bed, dozed right off, woke briefly a couple of times and went right back to sleep, slept through to 11am, got up feeling reasonably normal: still a little bit high from the Tramadol, but fully functional.

So that experiment counted as a (very) partial success. Starting on narcotics in the middle of Week 2 of six weeks of treatment is a clearly losing proposition; with Tramadol in particular, continued administration can have some very nasty side-effects, up to and including seizures. I’ve been on fairly hefty doses of oxycodone (10 mg. every six hours) for weeks at a time, and that’s not the end of the world, but at least at that dosage tolerance builds fairly quickly; within a few days it no longer helps my mood much, and makes me so stupid I can barely read, as a result of which I’m bored out of my skull. I doubt 5 mg. a night for a month would have those effects, but I also doubt it would remain effective, given that the side-effects of radiation are cumulative and I’m still in what was supposed to be the honeymoon period.

So this morning I left an urgent message for Dr. Weiss, and this time he called back fairly promptly. I explained the situation, and we discussed Ambien and the benzos as alternatives. I’d never had Ambien; I’ve had some of the benzos (back then it was mostly Valium) and don’t like them much. They help with sleep, but either it’s not good-quality sleep or they have bad after-effects; I tend to feel groggy the next day. And a month on benzos, given their tolerance/dependence risks, is really pushing your luck. So I was inclined toward the Ambien, which reportedly doesn’t have the grogginess problem and has much less of the tolerance/dependence problem. In particular, there’s an extended-release version that seems ideal for the waking-up-in-the-middle-of-the-night issue.

I hadn’t known about the downside; apparently there’s a significant incidence of sleepwalking and other unconscious behavior (the patient package insert listed “driving” and “having sex” as things I might do without being aware of doing them; I can only hope that no many patients do both at once) or just plain weirdness. Still, given the alternatives, it seemed worth a shot; I’ll take my first dose once I’ve finished writing this. (I went on line and found some patient discussions; apparently the rule is to take the drug in bed and turn off the light, to avoid both unconscious behaviors and the risk of over-shooting the sleep window.)

One option that just occurs to me now is to do Tramadol or another narcotic, Ambien, and one of the benzos in rotation. I’ll ask about that. I bet Ambien and the benzos, both GABA agonists, are cross-tolerant, but as far as I know neither one is cross-tolerant with the mu agonists. Someone should have done that study, but whether it’s actually been done or not I don’t know.Went in for radiation treatment and my weekly meeting with Dr. Sanfilippo. Went 0-for-2: about twenty minutes before I got to the hospital, the power went out and they were on backup emergency generators, and Dr. Sanfilippo wasn’t there so I talked to one of his colleagues. He suggested that I try a lidocaine spray for the throat, but didn’t seem very hopeful that it would work; apparently the pain relief only lasts about 90 minutes, and its primary use is to allow patients to eat and drink. Nonetheless, he phoned in a prescription, but when I got to the pharmacy I was told that my insurance didn’t cover it. I decided to pass for the moment on that option; if the Ambien bombs out I’ll reconsider, and in the meantime I’m going to yell at United Health Group.

Wish me luck on the getting-to-sleep front. I’ll report back tomorrow

Medical Journal: 8/28/18

Having noted the angiogram results below, some notes on the process:

I was instructed to show up for the angiogram at 7:30 a.m. so I could be hydrated intravenously before the procedure, as one way of minimizing the impact on my kidneys. Not very cheerfully, I did so. My cheer factor was not increased by the Lyft driver’s devotion to sports-talk radio; even fifteen minutes of that goes a long way. Arriving on time gave me the opportunity to spend a pleasant hour or so in the lobby before the cath. folks were ready to deal with me.

I got completely undressed, put on a gown, and lay down on a gurney. Then the consent process, EKG, blood pressure (a little bit high, to no one’s surprise), and they started the IV. Apparently someone took blood for lab work at that point, but I don’t think anyone mentioned it to me; a couple hours later someone asked me if I’d had my labs drawn and I said no, leading to what turned out to be a second blood draw (not, alas, through the IV line).

The unit is very heavily staffed; I think ten different people did things to or for me, all ofthem friendly and efficient.

Next step was shaving the two potential sites to insert the catheter: my wrist (in case the cardiologist chose to use the radial artery) and the groin (for the femoral artery). I asked about Brazilian wax, but apparently that’s an out-of-network expense. After the shaving, the groin area was cleaned with alcohol.

At some point in here, black x’s in what looks like Sharpie marker were placed on the tops of my feet and the insides of my ankles: roughly, but not precisely, symmetric. I’ve tried to figure out what that could have been for, but to no avail, and I didn’t notice until I got home.

Finally I met Dr. Feldman; up to this point he’d spoken to Dr. Weiss but never to me, which seemed odd. Like just about every physician I’ve dealt with in New York, he was more than willing to provide as much technical detail as I wanted. In order to minimize the dye load, the procedure took place in a specially equipped “bi-level” operating room that allows two sets of images to be taken simultaneously. Despite the precautions, he estimated my risk of needing dialysis at about 30%, but apparently the typical pattern is a decline over a period of days rather than acute failure. (That’s why Dr. Bomback wanted labs two days and seven days post-procedure.)

We discussed the wrist v. groin question. The wrist option has a lower risk of bleeding, but the groin option uses less contrast. That seemed to me like an easy decision to make. I’d had no food or water since midnight to allow the use of anaesthesia, but that turned out to be entirely optional, simply to help the patient relax rather than because of any pain from the procedure. Normal dosage would be 1mg. of fentanyl (a narcotic) and 10 mg. of Versed (a very short-acting benzo). I voted against it, partly on general principles –those are fairly hefty doses –and partly because I wanted to have all my faculties in a case significant blockage appeared and a decision had to be made about intervention.

The options seemed to be –depending on the degree of disease -a stent (which could be done on the spot), or something more drastic, all the way up to open-heart surgery, which would have to be scheduled separately. Dr. Feldman was agnostic as to what the test would find; apparently my PET results were worrisome but unspectacular. I was pessimistic; my exercise tolerance has dropped markedly over the past few weeks, and walking at full pace for even half a mile is now a strain.

At 11 a.m. –just as I was about to get on a conference call –I was wheeled in to the procedure area, marked by a huge nine-screen array of monitors (which I couldn’t see during the procedure, so I have no idea what they were for). The insertion of the catheter wasn’t entirely painless, but it wasn’t uncomfortable enough to make me regret the decision to go without the narcotic. I’m not sure why –maybe I wasn’t holding sufficiently still –but early on Dr. Feldman suggested that I get 1 mg. of Versed, and I agreed.

I don’t recall feeling it subjectively; I almost asked if it was in yet a couple of minutes after I’d agreed to it. When I mentioned not feeling it, Dr. Feldman said that in fact I’d drowsed off; one of the reasons I don’t like Versed is that it produces a strong prograde amnesia; for example, I have no memory at all of the three hours of back surgery I had in the mid-1980s, and in fact asked with some asperity when we were going to get going, only to find out I was in the recovery room. That was an extremely freaky experience, and I thought then and still think that patients ought to be warned about the possibility that they will lose a block of time before being given Versed. But I’ve never had that warning, and this was no exception.

After some period –maybe an hour, maybe less –Dr. Feldman said, “Good news. Some cardiomyopathy, but no significant arterial blockage.” I asked whether that meant the problem could be managed with medicine rather than surgery, and he said that it could. I suspect the Versed somewhat blunted my emotional response to this, but I did have the distinct sense that I’d just dodged a bullet.

Then back to the room and two hours of bed rest. Finally I was allowed food and water, if a somewhat stale banana muffin counts as “food.” The rest wasn’t very restful, as I had to keep my left leg straight, a significantly uncomfortable position for my back. Moreover, the patient in the next bed –separated from me only by a curtain –found the remote control for his TV and listened to a basketball game at full volume. Why hospitals don’t hand out headsets –as every gym does these days –is utterly beyond me. For admitted patients, I half suspect it’s a way of selling more private rooms, but that didn’t apply here. Fortunately, his sentence expired about half an hour before mine; next time I’m goingto remember to bring earplugs.

At 2:45, I was told that I could get up, and walked up and down the corridor to demonstrate that I was fit to go home. The single milligram of Versed I’d had meant that I had been “under sedation,” which meant that Richard Hahn had to leave work to come to the hospital. In fact, I was led out of the prep/recovery room into the lobby and left there, so I could have escaped without an escort, but since Richard was already on his way I dutifully waited. In the meantime, I had managed to reschedule my radiation treatment –conveniently just across the street from the angiogram –so I went for that, got in right away, and headed home.

As far as I can tell, neither the procedure nor the benzo had any after-effects; I had a good appetite when I got home.

It occurs to me that I haven’t written anything about the mechanics of radiation treatment, but (as some modern Bible translation no doubt phrases it) each day has troubles enough of its own.

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.

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: 8/22/18

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: 8/20/18

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: 8/12/18

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: 8/10/18

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.