A month and a half shy of my 36th birthday, I had an emergency lung transplant. Everyone told me that the first year after transplant is the hardest but, for me, the first several years post-transplant were an emotional rollercoaster. In November 2018 — just a few months after my transplant — they found a “spot” in my lungs. Bronchoscopies were done to biopsy the area. Over the weekend of Thanksgiving, I nervously awaited the biopsy results. The biopsy was negative, the spot remained, and life went on.
When I was seven months post-transplant, I suddenly had difficulty breathing and my lung function dropped significantly. My doctor scheduled a bronchoscopy for five days later to determine the cause. However, just two days later, and after walking up the stairs, my oxygen saturation dropped below 60%. My wife and I rushed to the hospital, where I was immediately put on supplemental oxygen, and then high-flow oxygen. Even with the high-flow oxygen, my saturation was below 90%.
This felt like an all-too-familiar scenario. The doctors decided it was necessary to intubate me. While my wife watched helplessly, a swarm of doctors prepared me for intubation. My wife was told to “give her a kiss and tell her you love her,” was handed a necklace I wore every day since my transplant that said “survivor,” and was left to stand alone in the ER hallway while the doctors worked. This felt like the end. Hours later in the ICU during a bronchoscopy, the doctor broke through a wall of scar tissue that was completely obstructing my right airway. My wife, who was in the room, saw my oxygen level shoot up to over 90%, and my color turned from blue to red immediately. I was extubated the next day and sent home the day after that.
Then on the cusp of celebrating my first lungiversary, I was diagnosed with cancer. The “spot,” which was now slightly larger, turned out to be Post-Transplant Lymphoproliferative Disorder, a lymphoma that develops due to immune suppression. I met with an oncologist, and she recommended eight cycles of Rituxan, a targeted antibody infusion that had far fewer side effects than chemotherapy. After four cycles, a CT scan showed that the cancer had grown in size — the Rituxan wasn’t working. My options were now limited to a study that I ended up not qualifying for and chemo.
I began chemo about a week before Thanksgiving in 2019. A few days after my first round of chemo, I began vomiting. My wife came home from work to find me buried in blankets with a high fever. We went to the ER, where I was admitted to the cancer floor with a neutropenic fever. The fever resolved, but then I was diagnosed with a bowel obstruction, my fifth since transplant. This was not a typical bowel obstruction that was resolved with an NG tube and laxatives. I was in a lot of pain, and surgery was being discussed. I advocated for surgery, knowing something was different this time. The doctors eventually relented, and one year and six months to the day from my lung transplant, I had bowel surgery. The surgeon removed over three feet of dead and twisted bowel. I was in for another long recovery and still had to treat the cancer, which could not occur until I was more fully healed from the bowel surgery.
My second round of chemo went fine. I had started losing my hair immediately after my first round and was wearing headscarves. A few days after my third chemo round, I started spiking fevers and my oxygen saturation was barely 70%. I went to the ER, where I tested positive for the flu. Chemo had knocked out my immune system, and the situation quickly devolved. A two-week battle with pneumonia ensued, requiring a BiPAP at times and high-flow oxygen. I improved very slowly and after a couple of weeks, I was sent home on 6 liters of oxygen.
My oxygen saturation was stable when I was at rest, but when I started moving, it plummeted. My doctor did not expect my lung function to recover to its previous level. I was determined to prove him wrong. I walked — at first just to the end of the street, with my wife lugging my oxygen tank behind me — every day. Every day I tried to go a little farther, a little faster, and with a little less oxygen. Gradually, I was able to be weaned off supplemental oxygen, and after several months my lung function returned to near pre-flu levels.
I had been home only 10 days when the world irrevocably changed, and the COVID-19 pandemic hit. I still had two rounds of chemo to go, and being further immune suppressed in a COVID world was scary. Nevertheless, I finished chemo without incident, and a couple of months later was declared cancer-free.
During this time, despite a regimen of laxatives and GI motility drugs, I continued to have bowel obstructions, so many I lost count. I spent Christmas 2020 and New Years 2021 alone in the hospital with bowel obstructions, as visitors were prohibited entirely at that point in the pandemic. Realizing that the bowel obstructions were closely related to dehydration, I began receiving IV fluids a few days a week, and the frequent bowel obstructions stopped.
The first four years after my transplant were a whirlwind, I felt like I was jumping from one catastrophe to the next. But in between dealing with these complications, I went to Disney World with my family (and even took the stairs effortlessly!), celebrated my first lungiversary (complete with a lung-shaped piñata), climbed over 600 feet to Delicate Arch in Utah, traveled to Europe, renewed my vows with my wife to celebrate almost 25 years together, and bought a new house. I am grateful to the donor I never met who saved my life, giving me seven and a half extra years with my family and friends. Transplant has been a long and difficult journey, but it has been worth every bump in the road.
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