The Big One
here are many peculiar pumps in the world providing the impetus for the transportation of materials of one odd sort or another. Many of these are materials that people don’t ordinarily associate with pumping, such as: concrete, chocolate and molasses, coal, natural gas and many others. Yet one of the most important of these peculiar pumps is more common than even the quotidian water pump with which we are most familiar, and that one is: the blood pump.
As far as I know, I’ve never had a heart attack (myocardial infarction), which is to say that if I have had one it was a very minor affair, so the title of this article is somewhat misleading, just an attention grabber for which, accept my apologies—it’s not easy for an old man to get anyone to read about his ailments.
Yet my blood-pump functions very poorly and it is a Big Deal from my perspective. At one time, when it was worst of all, its function was only a fraction of that of a normal heart, about a fifth. When that happens, one’s body is compromised in all sorts of nasty and unexpected ways.
Cardiomyopathy is the medical term for this condition. It comes from its Latin roots: cardio-myo-pathy, or heart-muscle-disease. But to my mind that term doesn’t tell one much. It is a mistake to think that because most medical terms are expressed in Latin that the terminology is more knowing or precise than it might be in, say, English. Certainly much more is known about medicine today than during the time when the parts of our body were originally dissected and described in Greek, and later in Latin.
Even the Englishman, John Gray, of Gray’s Anatomy fame, felt compelled to carry on the medical tradition of categorizing the parts of our body using the Latin of his predecessors. And the dozens of editors of his book that followed, producing subsequent editions, each with more heft, did so in the same way. There is a sort of a code involved here, one that I’ve become convinced is intended as mystery.
Look at one of your Prescriptions one day; aside from the doctor’s almost purposefully indecipherable scrawl, key parts of it are written in Latin, probably not so much to confuse you as simply to carry on the mystery, thus enhancing doctors’ and status in a way that is not terribly different from that of the witch doctors of the distant past. You may for example see a particular medicine with a peculiar little symbol after it: bid, or tid. These are Latin abbreviation for: Bid in Die, or Ter in Die, which is mystery-code meaning simply that the pharmacist should tell you to take the medication two, or three, times a day respectively.
Medicine is full of these obscure little codes, while the guilds of Carpentry, Meat Cutting or Masonry, nearly as old as that of Medicine, seem to have transitioned quite clearly into English: thus the 2X4 (which aren’t, quite), the top round and the arch, English all. These guilds seem to have quite lost their franchise—well, perhaps not the Masons or the Plumbers.
You will also find, if you travel much, that physicians seem to have a lock on prescriptions, primarily in nanny-countries like the United States and Canada, and a few places in Europe. In the rest of the world this rigmarole is quite unnecessary. In most of the world a pharmacist is a profession with some meaning; if you have a serious cough the pharmacist may prescribe—all on his own—some sweet stuff laced with codeine. Here, the term pharmacist simply means that one is qualified to count pills and write bills.
Today, Medicine’s attempt to explain to the patient what is going on in his body—a modern bow to man’s new openness—has given rise to all sorts of words that parallel the Latin of the profession. Doctors are, at heart, guild people, after all, and they continue to use a sort of secret language, one that in a subtle way helps to protect their franchise.
An enlarged heart is a layman’s term for the condition in which the heart-muscle becomes soft, flabby and bloated, and thus dysfunctional. A heart ‘attack‘ is not necessarily associated with this condition initially, though finally, when the heart gets weak enough, myocardial infarction—to speak in the code for heart attack—will almost certainly follow. And then it will be The Big One.
This disease is also known by another common name: Congestive Heart Failure, CHF. This is because a primary consequence of the weakened, usually enlarged, heart is reduced pumping capability and, as a consequence, this defect then begins to affect other organs; they don’t get the blood that they’re used to and that they need in order to function properly. Because of their intimate association, this happens most especially with the lungs (pulmonae in code).
The lungs snuggle right up to the heart, one wing on each side, as though to embrace it lovingly. But when the heart, ailing and grumpy doesn’t reciprocate, the lungs, feeling jilted and put-off, protest by becoming ‘congested’ with fluid, simply to attract attention; they get tetchy. Caught in the crossfire of this organ-romance gone bad it then becomes difficult for one to breathe, thus congestion. There are so many potential causes of this common disease (pathology) that even medical professionals often don’t know precisely what the cause is.
he head cold was severe and the follow-on bronchitis worse; the viruses seemed to settle in my lungs and find a permanent, pleasant nest there, replicating and replicating themselves until they quite took over the joint, like Hells Angels gone bad. When I returned to Pittsburgh from one of my frequent trips to Philly, where I had first contracted it, I wondered if I might have Legionnaire’s Disease, which seems to have originated in the City of Brotherly Love.
After weeks, it never seemed to go away. Finally I went to a pulmonary specialist who told me that I now had asthma. He prescribed an inhaler (of albuterol) and that helped considerably. I was 50 years old and things seemed in control. But when I became 64, it unaccountably, and rather quickly, became much worse. Soon it became so difficult for me to breathe that I could hardly manage to walk. Here the story becomes oddly surrealistic:
Since by that time I had lost track of my original pulmonary specialist I made an appointment with another who saw patients in Southside, convenient for me. This fellow had an X-ray of my chest taken and a pulmonary function test—you blow, hard, into a tube; the device measures the capacity of your lungs in terms of volume and pressure. When I returned to get the outcome it turned out that this ‘new’ doctor was, quite by accident, the same doctor that had examined me when I had been 50. He had simply changed offices and I had not recognized him fourteen years later.
As engineers do with tracings, doctors do with X-rays; they keep them for years. (Engineering companies actually archive their documents in caves especially modified and dehumidified for the purpose—though now it may be done digitally.) My new-old doctor had had the presence of mind to ‘pull’ my original records from his archives and, to my good fortune, had thought to compare the new X-ray to the one that had been taken fourteen years earlier. I think he had a suspicion. When I came back to get the test results he told me that I had better see a cardiologist, and quickly. He said, “You have an enlarged heart.”
This was a term I understood generally, though I wasn’t sure exactly what it meant; my paternal grandmother had had an enlarged heart and eventually died from a heart attack as a result. I can remember baby-sitting her occasionally when I was quite young, simply to use the telephone to summon help if she went bad. And two of her daughter’s had the same disease, and died at an unusually young age—they still had young children.
I picked a Heart Man out of the Yellow Pages on the basis of how far I had to go to get to his office. This one was in downtown Pittsburgh, not too far from Southside. After a number of tests were administered and he had examined me, he marveled that I had managed to make it to his office unassisted. He said “We’ll have an ambulance take you over to the hospital.” I told him that I had my car here (downtown), and that I could get there on my own. I got to my car in stages, stopping and leaning against a wall to breathe every fifteen feet or so. Once in my car, sitting, I was OK.
I drove back to Southside and, characteristically, stopped at a bar for one last beer, in the same way that a man about to be executed gets a last meal of his choice. Yet that exaggerates how I felt; I was strangely unworried; I had considerable confidence in doctors and hospitals, and I didn’t feel as though I were dying. I was 64 years old. Dying is a strange concept for all of us for the simple reason that none of us has ever done it before, so the possibility continues to seem remote. A case of logical induction gone bad.
From my car I walked to the hospital door, again by stages, and I told the attendant my story. The cardiologist had given me a ‘prescription’ describing to them just what to do with me. They housed me in a ‘step-down’ unit, ordinarily a place where people coming from serious surgeries are put so they can be carefully watched for awhile. I was wired up to machines unknown; a blood pressure cuff automatically took its readings, tightly squeezing my arm every minute or so, all on its own; I was given a great many drugs and, over the next few days, extensive batteries of tests were administered. One of the drugs they gave me made me pee, frequently, but I was able to get up out of bed, wheel the IV stand with all its wires, bottles, tubes and appurtenances to the bathroom. It was only a few feet from my bed.
I shared the room with an argumentative black man whom the nurses had nicknamed “Earl the Pearl”. Earl drank his “Ensure” food supplement—which he liked; a bad sign right there; it tastes terrible—and he watched his television shows relentlessly while I read some sort of book with an engaging plot that I could get into, a typical reaction for me under stress. When Earl, who seemed to like me—he wanted to chat during television commercials—was provoked by something the nurses did, or something that he thought they ought to have done, but hadn’t as yet, he messed his bed.
The orderlies had to clean it up (and I had to smell it). That’s how he thought to keep them in line, to get what he wanted when he wanted it. The orderlies and nurses, always thoughtful, even tender—and, surprisingly, even to Earl—closed the curtain that separated us while they attended to his business and uncomplainingly changed his sheets. They admonished him only slightly, as though he were a child; he had been in many times before; he and the nurses were mutually well-acquainted.
Even when lying in the hospital bed, half raised up, I was encumbered with numerous wires that went to different parts of my body with suckers at their ends to stick them on with. It was some sort of continuous electrocardiographic device, strangely abbreviated, EKG (in this case from the Greek). Through this means, certain of my heart’s activities were displayed on a monitor out near the nurses’ station; there were many such monitors there, and one had been assigned to me. Presumably, warning signals would go off if I began to ‘flat line‘ or when some particular function of my cardiac system went frivolously on excursion.
Each morning my new cardiologist and his assistant made their rounds in the hospital, she taking notes. He listened to my heart from my chest and to my lungs from my back, me breathing heavily on command. He checked my ankles which were swollen with fluid because my heart was dysfunctional. Outside the room he studied the results of all the tests that had been administered to me in the previous 24 hours. He adjusted the medicines to be given me. His diagnosis (I found out only years later): alcohol-induced cardiomyopathy.
At the cardiologist’s office I had been questioned as to my drinking habits and told them, quite honestly that, on average, I drank about eight beers a day—not much point in lying to your doctor, thought I. This amount seemed quite a lot to him. It didn’t to me; among my bar peers I was considered quite a moderate drinker. But most doctors had become non-smokers and timid drinkers in the years since I was young. Doctors in the old days seemed to be just about like anyone else in their personal habits, cigars and booze as common among them as anyone.
In frequenting bars one learns considerable about other people’s ailments—often too much—and about the practice of medicine, a patient’s-eye view of it anyway. Much of this talk can be discounted; medicine, like electronic poker machines, daily numbers, and faith in a better life after death seems, in bars anyway, remarkably susceptible to desire and personal needfulness. But one of the points of belief about medicine and booze heard frequently in bars came across to me, a relatively analytical person, as having more than a little basis in fact:
It is understood by most bar-people that doctors are trained in medical school to roughly double the number of drinks that their patients have reported to them as having been consumed. This rings true to me because I know bar people well, and this underreporting is probably factual. So if my cardiologist followed this practice he would suppose that I drank 16 beers a day, which is quite a lot. This sort of system has a peculiar circularity to it: drinking patients, now familiar with the idiosyncrasies of doctoring, report half their consumption and the doctor doubles it. So it all comes out A-OK, unless one reports the truth!
Soon I came to think that my cardiologist was rather timid. I was then not concerned with his reaction to my drinking which, at this point, didn’t make any difference anyway since I was no longer drinking. Here in the hospital they were just trying to get me stabilized so that I wouldn't have a heart attack right there and then.
Tricia visited me frequently, and when in the hospital she would look at my rapidly growing ‘chart‘, that collection of papers that doctors build up about your condition and its treatment. This sort of review by amateurs is not something that medical practitioners are used to; they seem predominantly to think that it might be better if patients and their relatives didn’t see it; a not completely unreasonable position. But one of the many interesting things that the years of the 60s and 70s managed to do was to open up traditionally dark places to sunlight and it seems that one of those crannies was your medical chart, emphasis on your. Patients in most hospitals now have the option to look at it—though they may not want to. They didn’t always have that opportunity before.
When Tricia went home after a visit she would, scribbled notes from my chart at her side, check on the Internet and compare what they were doing with me to the recommended treatment. This is a two-edged sword; one ought not expect to sufficiently understand the practice of medicine in a few hours on the Internet; it’s actually quite a tricky business. Yet we found that a little checking was not all bad; doctors, as everyone else, come in a variety of dispositions, one of which is over-cautious.
I was taking several heart medications: cordorone to help to keep the heart from fluttering (fibrillation), which could quickly lead to a very bad—perhaps fatal—heart attack; capoten, a drug which, among other things, sort of relaxes your blood vessels and maximizes the pumping capability of your poor, flabby heart; and digoxin, which is a nice little drug that has been used for years, perhaps centuries, to simply smooth out the working of your heart making its action less frenetic—I nicknamed it heart-grease. All of these medications are normal for my condition. But this cardiologist seemed to be very cautious in the amount of capoten used, overly so it seemed to us and, more importantly, to my Primary Care Physician, who thought so too. And I didn’t like the cardiologist’s looks or the regal way he acted either, an unusual metric, but not an entirely ridiculous one either. I asked my PCP if he knew another cardiologist. I told him I wasn’t too thrilled with this guy. He said he would try to help. He did.
The next day, on his rounds, I dismissed my first cardiologist, telling him I had lost confidence in him. He was not pleased but there was not much he could do since, for now at least, the patient remains the boss—though as I write, the rule book is up for revision. My new cardiologist, a pleasant and businesslike fellow, upped the dosage of the key drug very considerably. It helped, but not right away.
For several nights I had suffered under a terrible condition termed: sleep apnea (a Greek code word). Ordinarily, when you breathe, and when your heart beats, you don’t consciously have to think about it and do it. It is an autonomous function—one you don’t actively have to think about—except when it isn’t. With sleep apnea one has consciously to think about breathing. When you are awake it is simply a nasty annoyance, but Just as you begin to fall asleep you ‘forget’ to breathe, so naturally you wake up right away, and this continues on and on so that you simply cannot sleep. Fortunately this debilitation lasted only a few nights. Very gradually I began to get better. After a great many trips to the bathroom, the swelling in my ankles finally began to reduce. My heart began to behave itself better. My blood pressure level was reduced.
As I got somewhat better there was one final test that they recommended: a heart catheterization or, in new-med-speak, a “cath”. This is a procedure where they stick a probe up one of your arteries and into your heart to look around and see what’s happening in there. In particular they are looking for blockages, blood vessels that are compromised either from the inside by plaque (bad cholesterol) or from the outside by something else, such as a tumor, pressing on a vessel. To facilitate this usually safe operation they give you drugs, very good drugs. You’re not exactly asleep but you really don’t care what’s going on. It is not only that you don’t feel anything, but you probably wouldn’t care very much even if they decided on a whim to cut off one of your appendages.
I was released a few weeks later. Before they let me go, the cardiologist told me that I needed a heart transplant. Oh! And here I had thought I was getting better. He recommended one of Pittsburgh’s better hospitals, Allegheny General over on the North Side, and another cardiologist. So I found out that there are cardiologists and there are serious cardiologists; they’re not all the same.
I made the appointment and Tricia and I went to Allegheny General Hospital together, she not sure I could deal with them on my own and not taking any chances. After listening to my story, and reading the recommendations of my former cardiologist, he gave me the pros and cons of a heart transplant:
One is that if you do it you then have to take a lot of anti-rejection drugs—forever (or until you die)—hands full of them every day, and there are other downsides as well which I won’t go into here. Then he told me that there had been significant improvements in pharmaceuticals. He explained that up until recently, I would formerly have had at most a 10 year life expectancy just by taking pills; each year after the diagnosis had been made (time-now) the possibility of death would increase at 10% a year; so, in 10 years, at most, bingo, and 5 would be average. But then he said these new drugs could be better, and very likely were better, there had been no time yet to develop statistics on the matter. It was my choice he said.
Almost as an afterthought, he mentioned a third option: there would be trials of a new electro-mechanical device, a special pacemaker, going on soon at Presbyterian Hospital, a most well known local hospital for transplants. Usually it’s just called, Presby. So now, if I was willing to wait some time, and I could qualify, I could be a Guinea pig for this new device.
Now I had three choices: a new heart, some new drugs, and possibly a new physical device—a special sort of pacer, one that was called a bi-ventricular pacer. If I chose the last one it might help synchronize the pumping action of my two main ventricles. These cavities weren’t working well together because the electrical conduction between them had been blocked by something; no one knew what. So they weren’t squeezing together as they ought to. On the other hand, that option was still in the testing stages; did I want to be a test subject?
I opted for the drugs on the basis that if they didn’t work they would likely keep me alive awhile as the new bi-V pacer, as it was called, became more and more proven. The heart transplant never appealed to me much. I don’t know why; I’m not ordinarily squeamish about such things. Or maybe I was when it came right down to it. But I think the fact of the matter is that I simply didn’t feel all that bad, not so bad that I thought I would die. As I wrote above, when one has not previously died—never in your whole life—it somehow seems unlikely that it will happen now. Flawed, but unsurprising, reasoning.
The new cardiologist from Allegheny General Hospital eventually raised my dosage of cordorone from about 12 mg a day to 150 mg a day, definitely not timid! I saw him routinely every few months and, after a period of a year or so, taking all that cordorone and not drinking beer, my “ejection fraction”, or EF, perhaps the most significant measure of the heart’s pumping capability, improved from the number 15 to the number 40. That’s a Wow! Nearly two thirds of normal, which is about 60 for newborn baby. And the heart was no longer significantly enlarged.
The cardiologist said, I was now “asymptomatic”, and even if they now perfected the bi-V pacer I probably could not get one—I wasn’t sick enough anymore! And, by the way, he said, in the device-testing at Presby they had killed two patients. He said it just like that, without a speck of euphemism.
Each year after that however, on the same regimen, including abstinence from alcohol, the heart slowly regressed. When it got to the low point where I had started several years ago, he now began hinting around more strongly about heart transplants again. I decided on cardiologist number four.
This one was at Presbyterian Hospital, the top of the line. This new fellow was amazed at the amount of cordorone I was taking. He cut it down to zero. He suggested that my best option was a new device they had perfected—the bi-ventricular pacemaker. Now I wasn’t sure what to think. But I was getting worse and worse, going nowhere. So I went for it, hoping that they had got the kinks out of it by this time.
It seems that the procedure had now been stabilized. They said it could be inserted as an outpatient. It would take a couple hours, but I would have to stay overnight for observation. The operating room was imposing, and cold. They covered me with a blanket and gave me a very nice shot of something. Once again I was to be awake, but only sort of. The surgeon, a different man, said I wouldn’t feel anything. He didn’t mention that I wouldn’t care about anything either. Anesthesiology seems to have been perfected considerably over the last half century. I retain vague recollections of the ether that I had been given when my tonsils were removed at about seven years of age. It had made me very sick. This new stuff was great!
As I write, I have had the pacer for four years. I have about another year left on the battery. I have recently noticed a significant improvement in my ability to do modest work and in walking without getting out of breath. Next year I will get a new pacer. They don’t charge-up the batteries, which apparently are sealed in the mechanism, they just implant a whole new pacer. But the insertion of the leads, the wires into the heart, which is the trickiest part of all, doesn’t have to be done again.
Some time back, after I realized that alcohol was not a significant contributor to the problem, I began drinking again and I enjoy it very much.
So much for the old man’s ailments.