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Day 29: On the outside, I look healthy, but there’s a lot going on behind the scenes
Investigations revealed avascular necrosis in my hip. The medication keeping me alive was also strangulating the small vessel that supplies blood to the head of my femur, causing that bone to start cracking. After eight months my team managed to stabilise the problem. Eventually, I may need a hip replacement. “I’m sorry. I’m 99.9% sure you have post-transplant lymphoma. We’re waiting on blood test results for confirmation.” The lymph nodes on the left side of my body had enlarged significantly. My breathing was laboured. My CT San showed a cavity in my left lung. In 2013, I was displaying all the symptoms of post-transplant lymphoma. The irony of post-transplant lymphoma comes from its origin. It’s caused by the very medications that keep transplant patients from rejecting their donated organs. Two days after being told I had post-transplant lymphoma, a doctor I’d never seen before rushed into my room. Without preamble, he blurted out, “Have you been to Vietnam?” I nodded. He rubbed his hands with glee. “I don’t think you have lymphoma,” he said. “I’ve found a fungus in your blood. I’m going to run more tests.” A fungus sounds like better news than lymphoma — but it wasn’t The fungus I contracted has a reputation for mimicking lymphoma. It also has a reputation for being fatal. Most people who contract this funky-fungi live in Southeast Asia. There are no treatment protocols. My medical team, along with the Infection Diseases team, were flying blind. The guys in the white lab coats were super excited to have an opportunity to study something they had never seen before. They nerded out over the results of my bloodwork. This funky-fungi can be contracted as airborne particles or enter the bloodstream through an open wound. Eventually, the lab guys established that I contracted the airborne version of the funky-fungi, which then migrated to my blood. I embarked on two years of the strongest oral antifungal. I no longer show evidence of the funky-fungi in my blood. But that doesn’t mean I’ve eradicated it from my system. It’s just as possible that the funky-fungi still lurking deep within my lungs — regrouping and getting ready to strike again. Slip, Slop, Slap Since my transplant precancerous and cancerous growths started developing on my face, chest, arms, and hands. The medications to prevent rejection also create a better environment for cancer. When cancer does develop, it thrives, growing faster because of the weakened immune system. My worst skin cancer required plastic surgery on my ear and four weeks of radiation, in 2023. Airborne respiratory contagions Lungs are the organ most likely to reject. The average life cycle for a donated pair of lungs isn’t fabulous — it’s because unlike other organs, your lungs are exposed to the outside influences — particularly airborne respiratory viruses. Once an infection settles in the lungs, even the common cold, there is a high risk of sparking rejection. When those white blood cells rush to an infection site, they scout around for any nasties — and donated lungs will always be considered a foreign body. COVID-19, with its tendency to overspark the immune system, carries a greater risk of rejection than everyday lurgies. I went into transplant with my eyes open wide. I knew it was a trade, not a cure. I knew it would require enormous discipline with my medication regime. Your attitude can change everything, and I believe it’s one of the reasons why I’ve had such a successful outcome. * Post updated May 2024 
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This Body of Mine Was Bruised and Battered, but It Survived, It Endured, and I Was Still Standing28/5/2022 Day 28 The first steps of recovery
Five days after my transplant, I walked a lap of the ward as a physio carried my tubes and chest drain equipment. Eight days after my transplant, I had my final chest drain removed. Then I took my first shower, standing up in six months. Before my transplant, the most physical part of my day was taking a shower A shower became a chore to endure, with extensive preparation and planning. From the chair placed midway between the bedroom and bathroom as a rest point to the oxygen cranked to its highest level. In the beginning, it was a relief to sit down while showering. All too soon, the motions of washing while sitting became an impossible struggle, and eventually, a shower was a half compromise, where I would sit under the stream of water, relying on the act of getting wet to keep me clean. There was no vigorous towel rub down at the end, merely an enclosing oneself into a bathrobe, then the slow shuffle to sit next to the heater. So the simple act of standing, being able to breathe while water coursed around my head, made everything I endured on the transplant list worthwhile. Every single second. On that day, as I stood under the water, breathing in and out without a struggle, the pain seemed inconsequential. It was a most simplistic pleasure. I didn’t have to hurry or worry about each breath because these wonderful lungs breathed naturally and without effort. Afterward, I looked at my battered body in the mirror. Scars, dressings, and bruises covered my body. Yet all I could think about was how great life was — because I could breathe. With my goals achieved, it was time to say goodbye On the tenth day, Grant took me down to the carpark in a wheelchair where Monkey was waiting. It was my chance to say goodbye to my beloved dog. In doing so, it allowed her to know that I was going to be okay because my breath was sweet and fresh and no longer reeked of the decay from my dying lungs. Recovery after lung transplantation surgery isn’t a quick process Physically, my body needed to rebuild itself. Initially, with wire holding my sternum back together, I was limited in what I could lift and carry — not that it was a huge problem because my muscles were wasted and weak. My body and brain had to get used to a whole new cocktail of medications. My body simply didn’t feel right. From being incredibly attuned to my body’s needs before transplant, I was now fumbling in the dark. Every symptom had me second-guessing myself. Adding to that, my memory was fuzzy. In those first few weeks in hospital, I struggled to recall a page I had just read. But I was a reader — so I persevered even though sometimes I needed to read the same page twenty times for comprehension. Yet despite everything, there was so much joy. A simplistic pleasure came from enjoying something that most people take for granted. I could breathe, walk, and talk, all at the same time again. These lungs are magnificent. They do what lungs are supposed to do, and they do it naturally and without effort. Three weeks after my transplant, I went home I put in hours at the gym, followed by hours of walking. On the three-month anniversary of my transplant, I walked 4kms in the City to Surf. It took me 56 minutes, which may not seem like much, but before my transplant, I couldn’t walk the full 20 meters on my oxygen cord without stopping. Nine months after my transplant, I returned to my job in a school library. I’d mostly adjusted to the cocktail of medications, and my memory had returned. But I still hadn’t quite figured out this new body of mine. By my first anniversary, I’d fully adjusted to life post-transplant. I’d learned to listen and decipher my new ‘normal.’ The horrible side effects from the cocktails of medications were now part of daily life.
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