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: 8/30/18

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: 8/31/18

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: 9/2/18

Two semi-comic incidents at CVS:

-When I complained of throat discomfort in my weekly meeting with the radiation oncologist, he recommended that I gargle with a lidocaine solution, though he warned that relief would likely be only temporary; the primary use of that medication is to allow patients to eat and drink, rather than to make sleeping comfortable. Nonetheless he sent in a prescription to CVS. When I went in to pick it up, the pharmacist said, apologetically, that my insurance company didn’t cover it. For $56, I probably should have just paid for it, but instead decided to ask the prescribing physician to push United Health Group on the question. That issue remains unresolved; in he meantime, I’m using a phenol spray for the same purpose; it’s slightly effective.

-After discussion with Dr. Weiss, we agreed that my heart-related symptoms were severe enough (walking as much as a quarter of a mile is now a strain) to warrant starting treatment now, instead of waiting until after the radiation treatment was complete. His choice was BiDil, a combination of two vaso-dilators: hydralazine and isosorbide dinitrate. When I looked it up, the indication is “heart failure,” so I suppose that’s my diagnosis, at least tentatively. (Not sure how to ask Dr. Weiss politely whether my heart condition doesn’t warrant treatment by a cardiologist rather than an internist, but I’ll figure something out.)

This time when I got to CVS I was told that the drug was on back-order. The pharmacist said that he had each individual drug in stock, but since the combination had been prescribed rather than the two drugs separately he wasn’t allowed to sell me the two individual drugs until I got a new prescription. This was not precisely what I wanted to hear at 5:30 of the Friday before a long weekend, but there didn’t seem to be any point in litigating the question, especially since Dr. Weiss hadn’t been very urgent about my starting on the medicine.

On a more serious note: I’m still in search of a sleep solution. I reviewed the idea of rotating molecules with my friend Dr. Sally Satel, an addiction psychiatrist; she said that there wasn’t any literature to back it up, but it made intuitive sense to her and didn’t have any obvious contra-indication.

Friday night I took half (actually, the slightly larger half) of a 0.5 mg lorazepam at bedtime. Made me a little bit drowsy, but not nearly drowsy enough to break through the discomfort of the sore throat. Got very little sleep; moreover, either because I was breathing with my mouth open when I did sleep or for some other reason the soreness in the throat was persistent (though still mild enough to mostly ignore except when I swallowed) and my voice was down to a whisper. (It recovered a little bit during the day, but not to anything like normal. If I keep sounding like this, I may decide to switch careers and become a Mob boss: I’ll be able to make people offers they can’t even hear.)

I got up feeling tired, miserable, sorry for myself, and a little bit afraid of how I’m supposed to get through the next month; if this is what the throat feels like after the second of six weeks of a treatment where the side-effects are known to cumulate and indeed might peak after the treatment ends, it’s going to be a very long month. I’d been making plans as if I’d be able to keep working more or less normally, except for the couple of hours the radiation treatments take out of every workday; suddenly that seemed unduly optimistic.

Sitting down at my computer, I saw an email about the New York State cannabis legalization project I’m working on, asking for some clarification of a note I’d written. I started to edit that note, and five minutes later I was fully alert and entirely cheerful. In the end, I got most of a day’s work done.

Still, I need to figure out a way to get something like a normal night’s sleep. So last night I decided to go for what seemed like a sure thing: since the Tramadol had worked well Wednesday, I tried it again, still at 50mg. (There’s some risk that its effectiveness would diminish if I used it for a month, but I decided that I’d burn that bridge when I was on it.)

Then I sprayed the throat with a phenol solution, took 1000 mg. of Tylenol along with my usual pre-bed doses of zinc and magnesium and the benzonatate cough medicine.

After taking the pill, I waited about 45 minutes until I felt the effects coming on, got undressed, got into bed, turned off the lights, and lay down on my side (my usual sleeping position). Right away I had the same sort of difficulty breathing I’d had with the Ambien: not as severe, and not as scary since I’d been through it once and knew it would go away, but damned unpleasant for all that. And with the Ambien, I could write it off as a possible allergic reaction to a specific molecule that I’d never taken before; having the same thing happen with Tramadol, two nights after having taken it with no side-effect, is flat-out weird. A quick search turns up an old paperclaiming that Tramadol does not exacerbate heart failure or cause respiratory depression. A question to discuss with my internist, and perhaps with a cardiologist, but that will have to wait until Tuesday.

Sitting up I could breathe, but only short, shallow breaths. Not sure what the fact of the matter was, but it felt as if the muscles of the chest didn’t want to relax enough to allow it to expand. Standing allowed somewhat longer breaths, but still nothing like normal.

As expected, I felt reasonably tranquil despite the breathing difficulty, and the lump I could feel in my throat didn’t command my attention, but lying down was out of the question. Fortunately, I have a comfortable reclining chair with an ottoman, so I dragged my blanket to the chair, sat down, worked on the breathing for a while, and finally managed to nod off. When I awoke an hour or two later, breathing was close enough to normal so I could lie down and finish off a good night’s sleep. Woke up this morning feeling excellent, but the voice was, if anything, worse than yesterday. Again, it’s recovered slightly over the course of the day: I can make myself understood over the telephone. But am I going to lose my voice entirely at some point in this process? That would be seriously inconvenient.

Now the question is what to do tonight. I need to sleep, but I don’t want another episode of heart failure or whatever that breathing problem is. The options seem to be:

1. Half a dose (6.25 mg) of Ambien, in hopes that I’d get the benefit of drowsiness without the breathing problem I experienced at the full dose.

2. A double dose (a full milligram) of Ativan; since the lower dose didn’t lead to any heart symptoms, but also didn’t do the job, I’d have to hope that the larger dose would also be benign to the heart but effective for sleep.

3. Tramadol again, putting up with the breathing problem for a while in return for a fairly good guarantee of a full night’s sleep.

4. Oxycodone or hydrocodone, hoping that the mu-opioid receptor action alone, without the serotonin action that Tramadol also produces, would provide the needed sleep but without the breathing problem.

I have no intuition about the right answer to this puzzle. But since I’ve tried the three other drugs in question, either without success or with unacceptable side-effects, but haven’t tried the opioids, that seems the most promising option, and also the one that may yield the most new information. I’m going to try 5 mg. of oxycodone; if that’s inadequate, I can try to boost it with a half milligram of Ativan. I do have one edge: I had a good night’s sleep last night and got up early (for me: about 8:30 am) this morning, so by the time I hit the hay I will have been awake almost 16 hours. Wish me luck.

Medical Journal: 9/3/18

If you wished me luck last night, many thanks. It worked.

Took 5mg of oxycodone at 11:30. By 12:30, I felt calm and drowsy, so I went to bed. Lay there restfully, with no problem breathing, but didn’t actually fall asleep. So I took half a milligram of lorazepam, as planned, and that did the job. Comfortable sleep; up at 9, feeling a little bit drowsy –probably a benzo side-effect –but functional. May nap this afternoon. Main thing is that there was no repetition of the breathing difficulty. Dr. Gary Emmett suspects it was a radiation side-effect, and likely to dissipate with time, rather than a drug side-effect.

Voice maybe a little bit better, but still very thin. Turns out that the liquid and the tablets I was advised to get to treat dry mouth do a fairly good job at dealing with the sore throat.

Medical Journal: 9/6/18

The good news is that the breathing difficulty doesn’t seem to have been either a drug side-effect or a radiation side-effect. That bad news is that it seems to have been heart disease.

Finally started on isosorbide dinitrate and hydralazine yesterday; no noticeable problem since, though my exercise tolerance is way, way down; even quarter-mile walk is now an effort. That may improve with time.

In the meantime, my sleep has been badly disturbed, to the point that I dozed off twice during the two minutes or so I lay flat today for the radiation treatment. Last night, despite being very tired, the sore throat woke me up even after a Tramadol; I added 0.5 mg. of lorazepamand that did the job, but I woke up slightly woozy and stayed that way most of the morning.

Turns out the insurance company was dead serious but not paying for the lidocaine solution; the recommended kludge was that I get the lidocaine as a prescription drug, purchase the other two components (Benadryl and Maalox) over the counter, and mix them up myself. Just did so –discovering in the process that I’d bought the wrong strength Benadryl solution –and on a first application it seems to be successful.

As of yesterday, I have no voice left but a whisper. Possible but not assured that the lidocaine mixture will help with that.

Second post-angiogram labs came back, with creatinine back up to 5.5 from the previous 5.0. That’s still lower than the 5.9 a month ago, but Dr. Bomback is still saying that I’ll need a new kidney in 6 months to a year.

Started the evaluation process at Langone yesterday; turns out that the team –which moved to Langone from Hopkins –regards Sally Satel as a Famous Graduate; dropping her name turned out to earn me instant goodwill. There seems to be little doubt that I can be cleared for the procedure. One of my candidate donors was turned down, but it seems at least possible that decision can be reversed on reconsideration.

Still functioning at work –during the few hours when I’m not playing patient –and work is still going well. But I’m definitely not looking forward to the next month. More when I know more.

See full medical journal

Medical Journal: 9/10/18

There’s no doubt the heart medications are helping, but I suspect the dosage (37.5 mg. hydralazine and 20 mg. isosorbide dinitrate three times a day) may be a bit too low; I’m good all day, but by the time I wake up I’m breathing hard. Will ask Dr. Weiss about that.

Also noticing some swelling in the feet and calves, most markedly in the right foot. That can’t be a good sign.

The hydralazine is marked “take with food,” and I discovered why when I took it along with just a little bit of food and failed to keep it down. It turns out to be fortunate that the pharmacy didn’t have Bidil, the combination drug. The levothyroxone I take has to be taken in the morning, at least 30 minutes before eating anything. That means that I can’t take the hydralazine first thing in the morning; fortunately, I can take the isosorbide, which seems to give fairly rapid relief from shortness of breath.

I’m also running into some fairly severe leg cramps at night, despite taking both zinc and magnesium drinking plenty of water. The episodes don’t last more than a couple of minutes, but while they last they have my undivided attention. They may be related to the spinal stenosis which I had fixed surgically thirty years ago but which I know is coming back.

On the other hand, the throatis much less bothersome than it was; what soreness remains is mostly well-controlled by cough drops and a phenol spray, without resorting to the lidocaine-Maalox-benadrylcombination. It was never much of an issue during the day, but now it isn’t a problem at bedtime either. I haven’t needed a sedative to sleep for the past three nights, which means I’m functioning better mentally. I’m now mildly optimistic that the radiation side-effects will be reasonably tolerable, which is considerably more optimistic than I was at the end of last week.

The voice has improved a little bit, from just a whisper to a fairly audible croak that sounds like a bad imitation of Brando playing Don Corleone; that may be just because I’ve done very little talking since Friday.

See full medical journal

APPENDIX FOR EXPERTS

As part of the evaluation process for a kidney transplant, NYU Langone drew a dozen vials of blood and took a urine specimen. (The vampire must have been thirsty.) The list is below. The highlighted items were either negative or within normal limits. Results for the rest below.

Medical Journal: 9/17/18

Some progress. I boosted both heart meds to 4 times a day (with an OK from Dr. Weiss), and that seems to be close to adequate to prevent the problem of waking up air-hungry. I actually got something like six hours’ continuous sleep last night, if you’re willing to count 7am-1pm as “last night.” I’d been taking the heart meds by the clock, and if anything pushing the timing a little when I started to feel my breath shortening. But it’s now 6 hours since my last dose, and I’m feeling fine. I can do a 15-second inhale followed by a 15-second exhale, though I can’t keep it up for long; at my worst, I was at about a second each way and my chest muscles were aching.

Voice is still pretty much a whisper; I’ve now got a headset rig at home that makes me reasonably audible on the phone.

Still trying to connect him and Dr. Bomback to negotiate the use of other drugs to improve heart function that might pose a kidney risk, but the combination of swollen feet and calves and very low exercise tolerance convinced him that I should go back on half my previous dose of Losartan. That does seem to have brought the blood pressure down a bit; last reading is 121/70. I wonder whether the sudden onset of heart symptoms had to do with my going off the Losartan and the hydrochlorothiazide to protect what’s left of the kidneys.

So I’m feeling all right,but the swelling is still there, and exercise tolerance is if anything lower than it was a few days ago. Even at a reduced pace, a walk of as little as a quarter-mile is problematic.

The optimistic viewpoint is that I’m feeling the side-effects of radiation (today was session 19 out of 28) and will bounce back when that ends two weeks from now. I don’t really want to think about the pessimistic viewpoint.

The good news is that I’m now up to four volunteers to give me a kidney, which is heart-warming as well as life-extending.

Medical Journal: 9/20/18

Dr. Weiss prescribed Entresto, a combination of two drugs neither of which I understand, to try to get my heart back in action. The first I knew of that was when I showed up at CVS to pick up another prescription. So I had no briefing about how to take it, what side effects to expect, etc. I talked with the pharmacist, who told me to go off Losartan, since one of the drugs in Ernesto works through the same mechanism. Indeed, he recommended that I take a three-day break from Losartan before starting Entresto; apparently the interaction risk is hypotension. Read the PPI, which told me Entresto tends to raise potassium levels, and my potassium was already at the top of the normal-limit range. Delighted not to eat avocados, but I’ll miss spinach, bananas, potatoes, and sweet potatoes. This is not the first time Dr. Weiss has prescribed something without telling me about it: not a good practice.

Went home and took my first dose. Within 90 minutes I felt much better. Can take a full slow inhale-exhale. Walked about 1/10th of a mile at full pace; at the end, I was breathing fast, but felt fine. Slept almost 12 hours without any breathing problem.

Weighed myself and I’m five pounds down from yesterday; the radiation oncology team pointed out to me that the swelling in my feet and legs probably meant that I was retaining water throughout the body, and asked me whether I had gained weight. I had: I was up to 250 from a trough of 235. However, the foot and leg swelling is still very marked (to the point where it keeps me from fully rotating the right foot up and down) not obviously improved from yesterday.

Got up this morning and took Entresto (Rx is for twice a day) and isosorbide; didn’t take the hydralazine because it has to be taken with food and I felt slightly queasy. It’s now 2pm and I still haven’t taken it, and my breathing is still fine. On the other hand, I’m feeling a little bit dazy –not too much to work, but clearly not 100% mentally –and there’s a fairly loud ringing in my ears. Hoping these are transitional effects and will subside. Called Dr. Weiss’s office to make an appointment and was offered next Thursday; asked to have him call me.

Despite the daziness, it’s hard to express how much better I feel.

Medical Journal: 9/24/18

Turns out that Dr. Weiss had left me detailed instructions, but on a voicemail I didn’t see. As a result, I failed to discontinue the Bidil combination before starting the Entresto. That may explain how terrific I felt just after taking it. Now that I’m on the Entresto alone, my breathing is fine but my exercise tolerance is back down. I can walk a few blocks, but not at full pace.

Dr. Weiss says that the Entresto dose is the minimum, to test whether it’s hurting the kidneys. Will do a creatinine test 10 days from now; if there’s no sign of damage, he will boost the dose and expects to have me back to baseline in terms of functioning. (The Entresto treats the symptom of cardiomyopathy –which turns out to be my diagnosis –without treating the underlying disease; I’ll be on it for the rest of my life.)

The swelling in my feet and lower legs has subsided, though not yet back to normal. I’ve also dropped considerable weight, down from 250back to 237, which was about my trough. I was wondering why I was gaining weight back; hadn’t thought about fluid retention.

My current problem is that the radiation side-effects are indeed building up. It now feels as if I’d half-swallowed something. I don’t feel it ordinarily, but it’s uncomfortable to swallow food or water,and it’s noticeable enough lying down so I can’t get to sleep without chemical assistance. I’m now getting a full night’s sleep, but whatever I took the night before leaves me draggy during the day. Whispering works ok over the phone if I have a headset, and for one-to-one conversation, but it’s a problem when, e.g., I need to use my cellphone to tell a Lyft driver where I am.

Five radiation sessions to go, and some additional time to recover.Looking forward to it.