Abstract

In lieu of an abstract, here is a brief excerpt of the content:Gaining a Heart But Missing MyselfLeilani R. GrahamI 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. [End Page 109]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...