The morning of August 13, I woke up at 7:30 without an alarm. I had slept in my house in San Francisco for the first time in three months. I walked through the kitchen toward rays of morning light breaking through the thick fog visible from the front window. Somehow my neighborhood always has some sunshine, even when the rest of the city is overcast. This was just a visit—my parents were sleeping in the other room, ready to address any problems that might arise, and to drive me back to my small apartment across the street from Stanford Medical Center where I remain tethered for the foreseeable future. I snuggled up with my dog, Basil, and read my book as I waited for my 8 o’clock alarm signaling the time to take Protonix and Sporanox, and then my 9 o’clock alarm for Prograf and breakfast.
Completely content for the first time in a while, I began to take stock of the changes in my life. In the last week I had lost twenty pounds of water weight, returning my body to something I recognized—my feet and ankles had definition, and my belly no longer bulged out in multiple sections. I fit into my old clothes and shoes again. This was all a major victory for a shallow 23-year-old: only a week ago I was mourning the figure I had known all my life along with the other parts of my identity I have lost forever. Regrettably, I must clarify this statement: while my torso now houses organs that once belonged to someone else, my thoughts, dreams and personality remain my own. For the first time in sixteen years there is a divide between the diagnoses in my medical history and my existing condition. An unembellished s/p (“status post”) marks my transition from Kathleen with Transposition of the Great Arteries and Idiopathic Pulmonary Arterial Hypertension to Kathleen, en bloc heart-lung transplant recipient. I need more than a medical dictionary to navigate my permanently altered life.
The principal change I noted that morning was that I felt good. Just six weeks with a new heart and lungs and I could feel the difference. Before my transplant, I was lucky if I got out of bed half an hour after my alarm. It was a fight to open my eyes, peel off my oxygen cannula, grab my IV pump and force myself to the bathroom so my body would begin to wake up before my brain could. I needed ten hours of sleep to rise without an alarm and even then I would unwittingly take a nap at some point. My UC Berkeley professors were less than impressed by my attempts to convince them to excuse me for accidentally sleeping through 3-6pm classes. I was regularly late to commitments—I moved slowly because of a combination of exhaustion and side effects from medications that made me ancillary to a bathroom. Now I was wide-awake after seven hours of sleep. My sleep apnea and nocturnal desaturation gone, my blood had been fully oxygenated throughout the night. By the end of the day I had walked 8.5 miles and explored peaks I didn’t know existed.
After the initial adrenaline (and pain medication) wore off, I hated life for a month. Days seemed to move slower and faster than ever: every hour was a physical and mental struggle to survive and at the same time I had lost control over how quickly the date changed on the white board across from my bed. I was told I would be discharged on July 8 and every day after July 8 I was told I might be able to leave the next day. Eventually under the permanent header entitled, “Estimated Discharge Date,” I wrote the word “tomorrow,” surrounded by ostentatious quotation marks with a swooping infinity symbol beneath it. Finally my last chest tube came out July 22 and I was released the following day.
The transition was anything but smooth: I had not adjusted to my new dose of Prednisone, a drug introduced by the Pharmacist as one with more side effects than there are letters in its name. I was sore, puffy, confused and irritable. Worst of all, I could no longer trust my memory. I began writing everything down so I wouldn’t forget it and so I could prove that it had happened. Still I would insist something I had imagined had actually happened and I spent chunks of time trying to find a record of it, only to give up, frustrated, half hoping someone had deleted the record just to mess with me. I was completely dependent on my overextended caregivers and feared I would make unsafe decisions if I went unsupervised. No matter how many people told me things would improve, I could not believe it. I wrote notes to myself in various stages of the drug’s influence: “This is all dumb and unfair and why are people celebrating?” “The only constant is that this is terrible,” “Try not to wake up in the morning,” “When Prednisone tells you none of it matters and to try not to wake up again, hallucinate a conversation with a dead friend to calm you down. At least you can be sure they are not real.” I was crushed. I wanted to sail smoothly through this whole process. Ever the over-achiever, I expected myself to set records for fastest discharge, least amount of pain meds, cheeriest patient…you get the idea. Yet here I was wishing they had given these incredible organs to someone else—someone stronger—and had let me die of the disease I was comfortable with in the body I was comfortable with. I was angry to be left with no choice but to keep breathing and existing. I didn’t want to talk to anyone or have visitors in this state. I was too out of it and embarrassed by my attitude. I was hardly lacking entertainment—I was imagining plenty of conversations with friends to keep me busy.
My family tried to find ways to make the days meaningful: taking me on walks around the mall to keep me moving, making delicious meals I could enjoy despite the restrictions of the immunosuppression and gastroparesis diets, or making me comfortable on a couch with Basil for an afternoon. I started Pulmonary Rehab and suddenly I had numbers that told me I was improving. I walked further each time, gleefully aware of the glowing 100% on the screen monitoring my oxygen saturation. I lost weight, added a blood pressure drug that ended the explosive headaches I would get with any sudden exertion, and everything began to click. In the hospital, every day felt like a year. The pain—the entire process—seemed insurmountable. Days blurred as I missed planned vacations, friends’ weddings and photography gigs. I write this having just passed the seven-week mark and I am blown away by how short that dark and painful time actually was. There are new agonizing surprises at every turn—Friday’s bronchoscopy was far more painful than I had bargained for—but I can finally see some real benefits from this ordeal. Having gone from wishing I had died in the operating room to treasuring the organs that brought me hiking up a hill to admire Half Moon Bay in 25 days (that number is based on the nasty little notes I wrote myself), I am cautiously optimistic about the next 365.