by DANIEL MUÑOZ
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 hear
t-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.
Implanting the LVAD is a major operation that requires open-heart surgery: It splits the chest open, separates the rib cage, and is not unlike the physical trauma of a transplant. Recovery is tough. As patients often say, they feel as if they’re going to “come apart.” You have to relearn to sit up, and to hold a pillow to your chest when you cough. Malcolm is strong and has a good attitude, and he comes through remarkably well. The LVAD appears to be doing its job. Two weeks after surgery, we send Malcolm home, tethered to his power source, able to go out, but certainly not back to work. Given the timing of my rotation and the scarcity of hearts, chances are I won’t directly care for Malcolm again.
That’s another aspect of the job that’s not right—not right for teaching or for treating—but I don’t have a solution. Unless you’re an attending cardiologist, seeing patients regularly, you don’t have ongoing doctor-patient relationships. As Fellows, we often see patients under the direst of conditions, sometimes near death; we diagnose and hopefully stabilize them; we send them home. And then the rest of their life happens, good or bad, and we often never know the long-term outcome. Did she live to be eighty-five? Or a week? Did she have more heart problems? Did she survive? Who treated her and with what? Did she die from an unrelated cause? Was she hit by a car in the supermarket parking lot? We don’t know. For doctors in training, it creates a distance between doctor and patient, leaving us removed and perhaps less invested. They really aren’t my patients; they’re just temporarily under my care.
In some ways, I don’t want to like Malcolm as much as I do—because there’s some chance of a bad outcome, that he won’t survive the transplant, or that he’ll die waiting for a heart. If he does survive, for how long? Making rounds with Dr. James, I begin to understand that what appeared to be his disinterest in the average cases might be professional distance. You have to move on. There are always more patients, always more bad hearts.
Two days before my rotation ends, one patient, Mr. Graham, actually receives a transplant. I didn’t treat him as a patient. In fact, I barely knew who he was, because he was one of the patients who waits at home, a name on a list until a heart is found. After a year, Mr. Graham has received word that there may be a heart for him, reason for both excitement and extreme caution. Plenty of patients have been called only to be told later that there was an issue with the donor heart—anything from developing arrhythmias prior to retrieval, to not pumping as vigorously as needed, or simply not looking strong enough to the surgeons. Because time is critical, the patient can’t live more than two hours from the hospital. Donor hearts can be outside of the body for no more than six hours, so they generally come from nearby—Pennsylvania, Ohio, Delaware, and Virginia—by helicopter, ambulance, or airplane. Theoretically, you could get a heart from as far away as Florida in six hours, but any travel delay can irreversibly damage a donor heart that could have saved a life.
But Mr. Graham arrives at the hospital, his heart arrives, it’s a go, and he has a successful operation. I see him in the surgical ICU a day later, and he appears to be doing all right, although all right is a relative term. He’s tubed into and out of every imaginable place, wires connected, monitors beeping, fluids flowing, IVs dripping, tethered like a NASA astronaut. But his vital signs are stable, and there are no indications of organ rejection. Access to his room is restricted, since almost anything can do him damage during the critical recovery period. His family paces in the hallway, smiling, whispering into cell phones, nervous but happy. Their dad or granddad or uncle or brother has gotten a second chance…if it works. With only twenty or so of these operations in a year at an institution like Hopkins, the event creates a stir even among the most jaded doctors and nurses. Everybody is on high alert. Everybody wants success. We don’t want to just do transplants; we want to do transplants that work.
When I finish the rotation, Mr. Graham’s transplant is working. After that, who knows? Some other doctors will be there when Mr. Graham returns for his checkups, or with a rejection issue, or to adjust his meds, but not me. That’s what’s good and bad about the Fellow’s role on the heart failure/transplantation rotation. It’s intensely interesting, challenging, a chance to make a profound difference in a person’s health at an intersection in time…but it is just that, an intersection, brief, random, and then over, disconnected from the person’s longitudinal, lifetime care. Later in the year, I’ll have another rotation on heart failure/transplantation, another “intersection,” and perhaps that will give me a better idea of whether I could do what Dr. James does as my career. For now, as with Mr. Graham’s outcome, who knows? Unlike Mr. Graham, I can put my fate on hold.
8
ROTATION: CARDIAC INTENSIVE CARE UNIT, PART I
The Other Hopkins
It’s the middle of October. On to Cardiac ICU at Johns Hopkins’s Bayview Medical Center. I’d like to say today is a crisp fall day with the leaves changing color, but I have no idea. I go from one sealed enclosure to another—hospital to car to home to car to hospital. I’m tired. I am also a little edgy going into this particular rotation. While I’d done cardiac intensive care unit rotations as a second- and third-year resident, this is my first time there as a Fellow, which means carrying greater responsibility for decisions. This time, I’m more doctor than student.
A few words about Bayview. Among medical residents and Fellows, Bayview carries a certain stigma. Although it’s actually a newer facility, in many ways with better technological equipment and good staff, these are details that traditionalists like to ignore because it feels like a community hospital—a satellite, and not a clone. If Hopkins is the headquarters, this is the branch office. A friend from my residency says, once you choose to train at Hopkins, you can find something wrong with just about anywhere else. We’re taught state-of-the-art medicine by great attending physicians. We see the hospital ratings every year, and Hopkins keeps coming out on top. We go home exhausted every night, or morning, and figure the exhaustion was worth it. Our tolerance for anything else becomes low. We develop an elitist pride—exactly the kind of attitude that I don’t want to have.
A practical difference between Hopkins “downtown” and Bayview is that many of Bayview’s medical residents are just doing one year of internal medicine before going on to a different field, such as psychiatry, neurology, or ophthalmology. All of these specialties require a year of general internal medicine so that a psychiatrist can tell the difference between an anxiety attack and epilepsy. That’s the good part. The downside is that part of my role as a CICU Fellow will be to make sure that, for example, the first-year psychiatry resident who correctly diagnoses a patient with mild depression doesn’t happen to miss the patient’s decompensated heart failure that is also present.
There’s a sharp difference too in the way the patients are treated. Downtown, we are more aggressive about treating sick patients on non-ICU wards. We will move patients to the cardiac ICU when and if there is an emergency. At Bayview, the
drill is to send the patient to the ICU first and ask questions later. As a Fellow on ICU, this can be frustrating when an ER doctor calls and says, “We’re sending the patient to the ICU just to be safe….” If one always followed the just-to-be-safe rule, all patients could be sent to the ICU because, technically, it is never absolutely possible to predict everything that could go wrong. Instead, you have to apply your medical knowledge and make a reasoned judgment. The fact is, between “take everyone to the ICU” and “take only the sickest to the ICU,” there’s probably an appropriate, wise middle ground.
Then there’s the difference in patient population. Downtown is split between two extremes: international VIPs (Hollywood celebs, Wall Street moguls, Washington power brokers, European gentry, Saudi oil barons, coming to Hopkins for the best medicine) and the hospital’s next-door neighbors (struggling families, single mothers, fatherless kids, drug sellers and users, urban casualties).
