Navigating the transplant system

5.1 Understand the institutions and individuals that participate in healthcare delivery and the role of the physician in the health care system.

I started medical school hoping to go into cardiology. The scientific concept of transplanting a heart fascinated me. Hoping to gain perspective on clinical aspects, I began shadowing during my first year of medical school. In Heart Failure clinic, the physicians served as fine tuners of the body’s cardiovascular machinery. Large hearts, stiff hearts, and saggy-baggy hearts all housed a room here. We managed medications and counseled on lifestyle changes to prevent decompensation. For those who progressed to end stage heart failure, we resorted to two advanced therapies- device or transplant.

Ms. S’s voice had taken on a tone of desperation. “They won’t give me the kidney transplant. I can’t sleep, I can’t think, I’m just so ANGRY.” Dr. H listened, paused, attempted to continue the interview, but the patient had become inconsolable. I observed her ankles swollen with fluid, her jugular vein bulging with too much stagnant blood. Our plan for her had likewise stagnated. She needed a replacement for her failing kidneys and a consequently failing heart, but obesity and smoking created problems for her placement on the transplant list. “I don’t know what to do. I can feel them dying.”

I was shaken by her tragic honesty and lost the words to console her. Dr. H expressed her empathy and then diverted her focus to achievable changes for the interim, such as losing weight and cutting down on cigarettes. She relied on her knowledge of the system, the barriers, and the limiting factors for our patient to receive a transplant. She kept us in sight of the medical goal.

I learned that day the consequences of having a bottleneck in our health system. The dilemma of a limited organ supply meant our best plan was to hold fast and wait—but waiting could also mean death for a patient. I wondered if I really still wanted to do cardiology, if all it amounted to was consoling patients stuck on a waitlist.

The next time I returned to the Ross Heart Hospital was a Sunday morning in August, having received a text message the night before notifying me of an opportunity to shadow a transplant. I met the surgeon and fellow and introduced myself. The operating room buzzed mechanically, nurses moving swift as machinery, two surgical teams shifting in and out of the scrub room, the body quiet at center. In the corner, I glimpsed Dr. H step in to observe the surgery. We sawed through the sternum, pried apart the ribcage, and cauterized the buoyant fascia. The pericardium, fine as satin, was sutured aside to create a window. I watched the surgeons lock eyes, nod, and collectively inhale as the anesthesiologist counted, “Five, four, three, two, one”. He pushed heparin, and the teams set back to work. I waited expectantly behind the surgeon until finally he stopped and rotated around. He held the heart in his hands. I laid it delicately on ice, wrapped it, and we stormed down the hall to the next operating room. Hours later, sutures were tied, tubes were removed, and a heartbeat ceased was resumed.

It took a village to transplant a heart—scientists, doctors, nurses, pharmacists, engineers, therapists, and social workers. I was privileged to witness the process at the bedside. I realized that despite the frustration, the waiting, the lack of resources, and the shortcomings of an imperfect health system, we had real hope of curing disease. Offering these treatments was not futile.

In my fourth year of medical school, I signed up for an inpatient heart failure rotation. We managed decompensated heart failure and helped our patients navigate the transplant bottleneck. One of my patients was admitted and we were unable to disconnect her from IV medications. I felt at a loss as to what we should do next. My attending instructed me to read about Status 2A on the transplant list and update him on the patient the next day. When I presented the patient, I noted that if she were to move to Status 2A- patients on a mechanical assist device- she would be higher priority for heart transplant. Sure enough, she was transplanted within a week of our placing an intra-aortic balloon pump. I watched her recover beautifully over the course of a month.

Unfortunately, not every patient gets a transplant that could. From listening to discussions between the attendings, surgeons, social workers, and LVAD coordinators, I learned how to assess patients for transplant candidacy. With patients who weren’t eligible for transplant, I focused our discussions on quitting smoking, controlling their diabetes, and attending all their health appointments- factors which would improve their likelihood of success from transplant. I spent a week on palliative consults in the Ross, which helped me to understand the integrated role of palliative care in the pre-transplant evaluation. This helped me to feel comfortable discussing goals of care and advocating for palliative care consultation for some of the patients. My residents increasingly allowed me to communicate with patients and families about our plans of care.

During residency, I will have opportunities to identify barriers to transplant and counsel patients on how to optimize their treatment outcomes. I will use motivational interviewing to promote key health behaviors such as smoking cessation, exercise, and glucose monitoring. Listening to patients’ goals and values will help me to guide them through decisions to pursue conservative, surgical, or palliative therapy. Understanding the benefits and limitations of the health system will help me to manage expectations and mentally prepare patients for advanced therapy evaluation. Over the next year, I will use my understanding of the health system where I’m working to ensure patients awaiting transplant are medically optimized and mentally prepared for the best possible outcomes.

Smart goals:

  • During the first month of intern year, practice using motivational interviewing to set at least one small, achievable goal with 5 patients who are attempting to quit smoking, lose weight, or manage diabetes. Practice this both in the inpatient and outpatient setting.
  • In the outpatient setting, ask patients how they are doing on their progress towards their health goals
  • Provide consistent, positive reinforcement for all patients who make improvements in health behaviors (e.g. eating better, smoking less, exercising more, practicing mindfulness)
  • For patients in need of organ transplant
    • Evaluate patient readiness and identify barriers to transplant
    • Counsel patients on the role of palliative care in the pre-transplant evaluation
    • Inform patients that attending medical appointments will increase their likelihood of a successful transplant
    • Inform patients that smoking, drug use, uncontrolled diabetes, and obesity will decrease their likelihood of a successful transplant

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