“So, that’s it? Huh. Well, there’s not much to say. I didn’t think I wanted it …”
“It” was a heart lung transplant. He, my patient, was 30 years old. We had just learned that he was 100% sensitized with antibodies to any donor. He would not be offered a transplant as he was certain to reject the precious gift of these organs. As he would have said, his body had the defensive strategy of a Brazilian goalie or in his beloved Xbox terms: well-protected “high ground” in Halo.
This would have been his fifth cardiac surgery.
“Well, this is a bummer.” He looked down at his tray of hospital food and wiped water from the edge of the steamed broccoli bowl, licking his finger. “So then, we aim for that quality of life plan,” his eyes searched mine as he looked up. “Eat the foods I like with flavor and maybe salt?”
As a congenital heart disease patient with heart failure and pulmonary hypertension, he had a required salt and fluid restriction. Chronic cottonmouth and cracked lips were his most consistent discomforts. However, the lack of flavor in food was the dealbreaker.
When our team discussed transplant as an option, he expressed his concerns. “You told me I could hike and keep up with friends … Well, I don’t want to hike, and I don’t have too many friends, definitely not ones who are hard to keep up with. I like being online, my video games, and eating scrumptious food with my family.” This was his conversation directed at the heart-lung transplant social worker, culminating brilliantly with “So, will YOUR transplant let ME do that?”
Upon news of the antibodies, which made transplant a moot point, his mother was tearful and distraught. She had long feared this moment, facing her son’s mortality every time he had a surgery, and with each mundane test between those medical milestones. Her son, my patient, was pensive. After that, he requested that end of life conversations happen in her absence as her coping skills were limited by her psychiatric illness.
I knew his current state was a result of the choices made for him: delaying intervention to minimize the number of surgeries but allowing pulmonary hypertension to develop. I wondered whether our choices as providers also led to his mother’s diagnosis.
“What do you think of dying?” I heard as I walked into his room. The palliative care team was getting to the crux of their conversation. “Well, it’s like a video game, no game lasts forever. At some point you die, but then you get resurrected … you have to wait to respawn, but you come back. ” That night, he decided to avoid aggressive life saving measures. At 4 a.m., he texted me: “I can’t breathe. I’m sitting in a chair to sleep!” I called the nurses who were aware of his symptoms and by his side. He needed comfort, and we decided on diuretics and Tylenol. Whether it was our acknowledgment of his fears or the medication, it worked. The next morning, the palliative care team suggested an opiate might make him comfortable. I was grateful that they didn’t make me decide.
“You have been with him a long time. This must be difficult,” said the palliative care trainee over the speakerphone into my office. Across my desk, the nurse I worked with nodded as she held back tears and I bravely said yes. Then I let the story unravel, as I shared our experience with another young man, the same age and diagnosis, the same rescinded offer of a heart-lung transplant.
The patient and his new bride came to the office to discuss having a baby after they received similar news about being refused for transplant. He was on diuretics and excused himself during the conversation. As soon as he left, I leaned in and leveled with the young wife. “He won’t live to see the birth,” I said softly. She met my gaze, placing a hand on her soon-to-be gravid belly, and spoke deliberately, “I know. This way, I will always have a part of him.” As he walked back in, we all smiled, with the tacit understanding of being on the same side. Later, their baby shower took place in the hospital ward, and he participated during lucid periods in between opiate dosing. He died two days later, three months before the birth of his daughter.
Plaintive, I looked across my desk to see my friend, the nurse, crying with her glasses in her hand as I re-emerged to the present, turning my attention to the palliative care fellow still on the speakerphone. “So,” feeling my voice crack, I regrouped, and said something vague in conclusion as he kindly responded and allowed me to hang up.
I knew that we, as caregivers, are affected by individual memories, but I was surprised when it became obvious that I was now emotionally intertwining one patient with another. The shared experience of these two young men was mine, but not theirs. One was gone, but the other was still here and deserved my full attention.
The next day, I traveled cross country for 24 hours to give a grand rounds but vowed to reinvest in his needs upon my return. He loved to quote Jean-Luc Picard in Star Trek: Generations, “Recently, I’ve become aware that there are fewer days ahead than there are behind.” There were very few things at the end of his short life that either he or I had control over. I was struck by his need to protect his mother. I would help him with that as soon as I got back. That … and the flavorful food.
The young man passed away peacefully, on a morphine drip, in the presence of his family and some homemade teriyaki chicken, before the author returned home.
Ami B. Bhatt is a cardiologist.
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