Gaining a Heart But Missing Myself

Originally published as a part of Narrative Inquiry in Bioethics, Volume 12, Number 2, Summer 2022 from the Johns Hopkins University Press.

I gathered it in my hands as it fell from my hair-brush,

too saturated to hold anymore. It felt as if I were inside a movie and waiting for someone to yell “Cut!” but no call came. It continued to fall, feather-like onto the ground, individual strands glinting in the light of the bathroom window. My hair, nearly all of it, was gone.

Between the time of my heart transplant and the moment my hair began to fall out, I arguably had suffered enough. Transplant brought four open-heart surgeries, ten days on ECMO, an intra-aortic balloon pump, delirium, necrotizing pneumonia, and so much muscular atrophy that I had to re-learn how to walk. CPR, broken ribs, and the scar of a tricuspid clip from a botched biopsy: it was not the miracle I was hoping for.

The internal trauma had certainly taken its toll. I no longer knew how I really felt, thanks to copious pain meds that altered my mind and body. Each limb was foreign as I re-acclimated to how one grabs hold of a cup, signs their name, touches their legs. Externally, I was a mess: covered in deep purple bruises across my torso from the diabetes treatments, dead skin pooling in unwashed pores, my ankles swollen and indiscernible from my legs. But lacking a good mirror (or the desire to find one), I still felt like “myself” during my forty-five day hospital stay. I could feel my cheekbones protruding from thinning skin, saw through unfocused eyes from the tempestuous blood sugars, and my hair sat in a rat’s nest atop my head; but I was still me.

Arriving home, I felt like a newborn being brought into the real world for the first time. I needed help with everything—showers, sitting up, putting on shoes, even going to the bathroom. At age twenty-four, I felt I had regressed to the point of no return as I relied on others to do the simplest tasks. In addition, I was quarantined inside for three months, due to the risk of obtaining a fungal infection from the outside. Caged, and alone in my body, I a trapped and wounded tiger: angry, hurting, and scared.

When I had been prepared for transplant—and I use “prepared” loosely because the information packet I was handed was insulting at best—I knew to expect the scars. I had no issue with that, having been cut open at my throat and chest for previous surgeries. I knew to expect a 12-inch line from neck to navel: the most evident sign I would now carry that I was disabled.

What I did not expect were the bullet holes— the sealed entrances of thick chest tubes that now dotted my lower torso. I did not anticipate the bruises on my arms and groin from arterial pokes. I felt violated as if I had walked into some kind of abduction and was rolled out, beaten, bruised, and, worst, touched.

But it wasn’t the physical trauma that hurt the most. It was that no one seemed surprised.

Immediately after transplant, the team’s focus is purely on survival. Survive the 30 days post-surgery. Survive the year. Metrics, uncomfortably tied to transplant center success statistics, funding, and clout have little to do with the patients themselves. What did I care to only survive a year? I wanted years. I wanted decades. It felt I wanted more than anyone was willing to pay attention to.

The conversation was narrowed to high-risk issues: infection, rejection, or other life-threatening conditions. While this makes sense on a clinical level, what constitutes a major event for a clinician may not be of the same emotional value to the patient. In my case, I was less occupied by how the steroids were working and more obsessed with their side effects, such as how much weight I was rapidly gaining. I walked into the clinic one day with the beginnings of stretch marks and a week later had claw-like ripples down my sides. My mood swings were explosive and terrifying. I had never experienced such a desire for food and hatred of my body at the same time. But in the eyes of a scientist, I was not experiencing rejection. The ejection fraction was improving. So there was no pressing issue. Some even went so far as to say, “but at least they kept you alive,” as if I were ignorant of what exactly I had just been through.

This wasn’t to say I was dismissive of the high-risks to which I was susceptible. I was terrified of rejection; of another surgery; of ending up back on ECMO. I took instructions seriously and never once strayed from my medical regimen. But I had lost that sense of self that I had maintained during the hospital stay. Each new side effect felt more pressing because, unlike whatever was happening to the new heart deep inside, it was visceral. In the mirror, I had cheeks fit to burst and bugging eyes as a result of Cushing’s Syndrome. I could not run my fingers through my thinning hair without weeping. I no longer recognized who I was.

This sense of self is crucial to hold on to during recovery from a transplant. It was one thing to feel apart from my body, to even feel out of sorts—it was another to see a different person entirely in the mirror. Medications wreak havoc. The regimen is complex and affronting, and the responsibility unparalleled. “You must take care of this organ,” they told me. “You must protect yourself; prevent infection; protect your gift.” But who was protecting “me”?

What I discovered through my dissociation is that one essential piece missing from organ transplant post-operative care is patient-centric goal setting.

When patients are being prepared to be discharged, it would behoove the patient, caregiver, and clinical team to set up goals that focus on the patient’s quality of life. Perhaps the newly diabetic patient does not have a preference for what they eat and simply wants to get off insulin as quickly as possible. Becoming severely type two diabetic was more of a shock for me than feeling someone else’s heartbeat inside my chest.

The patient with extreme mood swings may wish to see psychology more often to better titrate medication. Why are depression and anxiety an accepted side effect of most anti-rejection meds? Have we considered it might be the life-changing shock of transplant that triggers mental health issues more so than the meds?

A patient with limited resources may be concerned about getting back to work as quickly as possible, even if they aren’t 100% “back” to a normal state of being. This is where social work, therapy, and transplant coordinators should lead, having more high touch with the patient’s everyday life than a cardiologist.

Goal setting should be realistic. For example, the patient losing her hair cannot arbitrarily set a goal of getting it back quickly. They can, however, work with dermatology or pharmacy to see which medications might be contributing to the issue. They could get a referral to oncological services to see about wig fittings. Or, perhaps with better preparation and teaching, they could be better informed about what might befall them ahead of time. It may not make the outcome any easier to live with, but it would allow room for some appropriate acceptance.

Above all, providers for the patient should prioritize empathy in the clinical setting. In the end, there may be nothing they can do for a specific issue. Sometimes what patients need is support and an action plan from the people they see as having such control over their lives.

The nature of my distress was finally realized in the clinic when a doctor stopped typing on the computer, put his hands in his lap, and turned in his chair to face me. “I’m sorry,” he said. “I’m a man: losing hair is a concern. But I know especially for women, losing their hair can be extremely upsetting.” Just a brief moment—an acquiesce, a break from the lab values and charting and endless discourse on the importance of eating right—for the first time, I felt seen as myself again, for who I was.