Alpha Docs (6 page)

Doctors want to make rational, measured decisions, but most cases are not as purely rational and measured as we'd like. Some conditions change over time, with circumstances, with developments in science. In 1985, patients with HIV never received organ transplants. At the time, there was no long-term treatment for HIV; the prevailing wisdom was that if you were going to die of that disease, that new heart would be of more use to someone else. Now that there are treatments that can keep HIV patients healthy, they're more often considered for certain organ transplants. But the truth is, we're making not just scientific, but moral and ethical judgments. Although there are guidelines, processes, and metrics that try to make these decisions as clear-cut as possible, the fact is that our profession grants us the power of life and death over fellow human beings.

One night, after a long day on the rotation, I can't sleep as I try to unwind this mental dilemma. Why are we allowed to make these calls over people's fates? Who are we to decide? It's fair. It's not fair. Someone has to do it. No one should do it. As doctors, we are better qualified than most because we know the diseases and the risk factors involved. But what about the intangibles—the value of one person's life over another's? We have no way of knowing which person might do more for humanity or who might be a better father, mother, friend, or colleague. We aren't philosophers or priests or gurus. Maybe we shouldn't do transplants at all. But then more people would die. I look at the clock and realize that it's 4:40 a.m. In two hours, I'll go back to work, where these questions won't be rhetorical, and where these decisions will still have to be made.

The next day, Dr. James and I meet Malcolm. He's not the kind of case you see often, which means that he has Dr. James's full attention. Malcolm is six foot four, a muscular former college wrestler, now mechanic, who had just turned thirty-three. My initial impression was that Malcolm looked exactly the way you'd expect a former wrestler to look. Nothing about him denoted frailty…until he needed to string together more than a few words, and then he had to work to catch his breath. And while most athletes tend to have low resting heart rates, in the range of 60 to 75 beats per minute, Malcolm's resting heart rate was around 135. Even though he was in bed, hooked up to IVs and monitors, his heart rate was closer to what it would have been during his wrestling matches in college. He hadn't made bad lifestyle decisions, had no bad habits, or even apparently bad genes. Although he hadn't started to feel “different” until recently, he had told himself that his shortness of breath and inexplicable weight gain were just part of getting older, middle age coming on. But one day, he noticed that his legs were swollen as well, and had decided to see a doctor.

At first, he'd been prescribed antibiotics for pneumonia. When he didn't get better, his doctors tried treatments for other illnesses. But Malcolm was still tired, still out of breath, and his legs were still swelling. And then he had a heart attack—and not the mild, cheeseburgers-and-fries kind, but one caused by a thrombus, a painful, life-threatening blood clot in one of his arteries. In the cath lab, they located and sucked out the thrombus, and put in a stent to keep the artery open. But despite the evidence of Malcolm's chest pain, his EKG, and his enzyme levels, it wasn't a typical heart attack: It was the result of underlying heart failure.

A patient suffers a heart attack when a blood vessel or artery is blocked. Heart failure occurs when the heart itself is the issue—and Malcolm's heart was huge. It was dilated and functioning at a barely adequate level. A healthy heart has an ejection fraction of 60 to 65 percent, which means that of the possible 100 percent of the blood that the left ventricle ejects with each heartbeat, about two-thirds of it flows out into the rest of the body. Malcolm's heart had an ejection fraction of 10 percent. His heart had become big and dangerously weak, slowly, steadily stretching until it was a flimsy bag instead of a forceful pump.

I couldn't help but wonder why this had happened, especially since this kind of damage doesn't develop overnight. Most med students, residents, and Fellows feel the same way, naïvely asking the “Why?” questions over and over. We want to believe there are concrete answers to everything. But the attendings and the patients themselves remind us that, often, concrete answers don't exist. Heart failure can be the result of years of alcohol or drug abuse, but it can also come after a random encounter with a virus despite years of clean living. Sometimes there is another, benign cause that is normally treatable but once in a while becomes brutally destructive. Sometimes it's just unlucky genetics. There's a word for the cases with no apparent causes—
idiopathic
—but it is a fancy-sounding term for “nobody knows why.” When these situations arise, all we doctors can do is clear our throats professionally and tell the patient and the family, “Mr. Jones, it seems you have idiopathic cardiomyopathy,” and everyone nods as if that explains it.

In Malcolm's idiopathic case, the remaining 90 percent of unejected blood had pooled in his big, dilated ventricle, likely forming the blood clot that, through random bad luck, the weak, damaged ventricle had ejected into one of his coronary arteries. When the cath lab team had inserted the stent, they removed the immediate problem by opening the clogged artery and restoring blood flow. The coronary thrombus was gone, but Malcolm's heart remained weak, and with the left ventricle still pumping with pathetic inefficiency, the potential for another such clot was still there.

We've kept him alive so far. But just because Malcolm is in the cardiac intensive care unit doesn't automatically grant him a spot on the list for a new heart. He's here because the medications he's on and the type of IV hookup in his neck that measures pressures in and around the heart can only be done in the CICU. Our goal now is to stabilize him so that we can size him up: Is there a chance that he will recover? And if he doesn't, should we make the recommendation that he become a candidate for a new heart? Dr. James and I visit Malcolm every day and look for the signs, little and big, positive and negative, that might help us make this call. In particular, we watch for things that could keep him off the list, such as cancer, infection, kidney disease, or a serious pre-existing condition.

Although these decisions ultimately fall on the attendings, other key players get a chance to weigh in at the transplant meetings. Every Thursday at 3:00 p.m., a multidisciplinary team comprised of heart failure attendings, cardiac surgeons, nurses, nurse-practitioners, social workers, hospital insurance administrators, and Fellows gathers together to decide who makes the list—and who doesn't. These meetings are all about determining someone's fate, and they deal with every aspect of the transplant decision. (Even now, whenever I see that it's 3:00 on a Thursday, it still feels like “fate” time: Somebody is getting a spot on the heart list, or not.) They are candid, strictly off-the-record discussions of the patients, both those who have had the surgery and may be experiencing complications and those who are under consideration for a transplant. Altogether, only a handful of patients are considered per session. The conversations are not dramatic but businesslike and dry. If we do the operation, will the patient survive the surgery? And will he or she thrive afterward?

The focus of today's session is Malcolm. Should we list him? Should we delay? Before we get to the medical issues, there's another matter, a crass but real one.

Money. Heart transplants cost a fortune. Over an average of 30 days pretransplant through 180 days of procurement, hospital admission, physician treatment, and medications, a heart-only procedure costs $997,700, while a heart-lung combination costs $1,248,000. Harvesting the heart itself costs $80,000 (in case you've ever wondered what your heart is worth), and the immunosuppressant medications cost more than $30,000 per year. (Source: 2011 Milliman Research Report on organ and tissue transplants) Hardly any patient has that kind of money. Someone on the team has to make sure the patient has some form of adequate insurance, private or public, to cover it. Or the team member has to find a way to get the patient covered. This isn't a cold-blooded, protect-your-tail move on the hospital's part. It's a protect-the-patient's-tail move, so patients and their families don't spend the rest of their lives hounded by bill collectors and the law.

The hospital's insurance expert has already determined that Malcolm's insurance would not nearly cover the cost. But, as a veteran of this issue, she has a feel for whether she can get the coverage, and she is working with the state Medicaid office to see whether it could make up the shortfall. She gives Malcolm a tentative thumbs-up. If the patient qualifies, the team will do anything they can to make it happen. For now, Malcolm passes the money test.

Now to evaluate the hard factors (the medicine) and the soft factors (the patient's psyche, emotion, and acclimation). And in Malcolm's evaluation, something comes up: marijuana. The social worker reports that Malcolm had smoked marijuana about seven months prior. I'd been in the CICU when it was first noted. According to his recollection, Malcolm had taken a few tokes at a party over half a year ago. His cousin, who was visiting, corroborated the story, recalling that Malcolm had trouble inhaling without coughing.

The strict rule is, no drug use in the last six months, including cigarettes. Assessing the incident leads to a major discussion, and inadvertently becomes the social worker's moment in the spotlight. She launches into a sermon on the evils of drugs—all drugs, not just marijuana—and how his drug use should disqualify Malcolm. A doctor takes Malcolm's side. This was seven months ago, not six, so he's beyond the limit. The social worker says, “What if he's not telling the truth? What if he's taken drugs more recently?” The doctor counters that there is no indication of that. “He could have lied and said he's been a drug-free choirboy all his life, and we'd be listing him. Give him some credit for honesty. And the drugs have long been out of his system.” She suggests he may have other undisclosed behaviors. A nurse comes to Malcolm's defense. Statistics are cited on both sides. Despite the clinical nature of the meetings, the human element always creeps in. We're making decisions that cross the line between medicine and morality, and people find Malcolm likable. We want him to have his chance.

Just when it seems the debate is going to go on indefinitely, the usually calm, unflappable Dr. James says, “For God's sake, I smoked marijuana eight months ago and haven't had a puff since.” Several people snicker, since it's doubtful he smokes marijuana at all, but it does bring the discussion to an end.

But Malcolm still isn't on the list. There is another issue: the abnormal CT scan of his chest, which could be the result of fluid from heart failure or could indicate an inflammatory condition. Either way, it raises the question of whether Malcolm's lungs are strong enough to survive surgery and support the transplant.

The pulmonologists' best guess is that Malcolm has inflammation in his lungs, perhaps due to pulmonary fibrosis, a pre-existing condition of lung scarring thought to be potentially due to inflammation. So, we treat Malcolm presumptively: We decide to put him on steroids for pulmonary fibrosis for two weeks and then get another CT scan.

The conclusion of the 3:00 p.m. Thursday meeting: Malcolm will not be on the heart transplant list. For now, he'll be on the heart and lungs transplant list, because his own lungs probably won't hold up under a heart-only transplant. The heart and lungs list is like the Mega Millions lottery: Malcolm could win big but statistically he's on a worse list. Not only does Malcolm have to survive this bout of heart failure, possibly coupled with pulmonary fibrosis, but he also has to get stronger. At the same time, we have to find a matching heart and lungs, with the right blood type, and of the right size. It's not every day that an Igloo cooler with a heart and lungs shows up. And when and if it does appear, all of the doctors—the cardiologist and the surgeon—have to agree, at that point, that it's worth doing. Lungs are tough to transplant because they invariably get exposed to outside air and air is essentially poison when it comes to potential toxins and infections. Even clean mountain air carries potential microbiologic/toxin enemies that can wreak havoc on an immunosuppressed system—and Malcolm's lungs would be exposed to Baltimore's city air. Mega Millions odds.

As the weeks go by, I see Malcolm every day in the CICU, sometimes with Dr. James, sometimes on my own. He seems to be getting marginally better. Dr. James regards this small progress as significant. Now Malcolm can walk to the bathroom without stopping to rest, can say a few sentences without gasping. But is this improvement enough for an operation that would put him on the table for hours, detach his own cardiopulmonary system, and install someone else's?

Fortunately, Malcolm's next CT scan shows that his lungs look better after the steroids and heart medicine. This also means he might not need a heart-lung transplant, which makes a big difference when it comes to longer-term survival. Dr. James and I confer and decide. Ultimately, he goes on the heart transplant list—not the heart-lung list.

Although I see lots of patients, Malcolm is the one I keep thinking about. To remain stable, he needs to be on IV heart meds that can't be administered at home, so he's a prisoner of the ICU. At the next transplant meeting, the decision is made to put in an LVAD, a left ventricular assist device, which creates a pumping circuit that mimics and supplements what the left ventricle should be doing. Unlike a pacemaker, it doesn't jolt the heart; instead, it provides a continuous pumping action, like a rotor, enabling the left ventricle to work at an acceptable level. For Malcolm, this is good news and bad news. The good news is, with the device, he will be able to eventually go home. The bad news is that getting one reflects our concern that he might not get a heart transplant in time. An LVAD used to function exclusively as a bridge to a heart transplant, to get patients through what could be a two-year wait. But today, it's often put in instead of a transplant, as a destination therapy. No one knows which it will be for Malcolm, but it's apparent that his wait for a heart is going to be a long one.