“There are no words to describe how incredible it is to breathe deeply without pain.”
On February 28th, 2021, I received a double lung and liver transplant at The University of Pennsylvania Hospital that changed my life forever. And though my journey to transplant was not by any means smooth sailing, the twists and turns along the way certainly make for an interesting story.
No Limitations, Despite a Childhood Diagnosis
I was born in Cape Town, South Africa in 1983. My mother, a nurse, always suspected something wasn’t quite right with my health. At four-years-old, I was diagnosed with Cystic Fibrosis (CF), a genetic disorder that causes severe damage to the lungs, digestive system and other organs in the body. The life expectancy for someone with cystic fibrosis at that time was only 20-years-old. (As of 2020, it’s 44-years-old.)
Despite having this genetic disorder, I was a healthy throughout my childhood and led a relatively normal life. My parents wanted me to experience a life without limits along with my two siblings. Our family motto became, “We will cross that bridge when we come to it.” I genuinely believe this attitude led to a foundational belief in myself to never give up.
Cystic Fibrosis Complications and Medical Milestones
Even though I was incredibly diligent in taking my medication and following through with necessary therapies, my health started to deteriorate as I entered into my teens. At the age of 15, I developed CF-related diabetes. To add insult to injury, cirrhosis of the liver ensued the following year.
CF is not a common disorder in South Africa; therefore, many of the medications and therapies available in the United States are not available there. Today, with a population of almost 60 million people, there are only around 520 diagnosed children and adults who are affected by CF. The FDA approved, ORKAMBI®, as the first medicine to treat the underlying cause — rather than the symptoms — of CF for children ages two to five. I was, incredibly excited, as this medication could potentially extend my life. I immediately set out to see if it was possible to obtain the medication in the US.
Through an associate at work, I connected with Dr. Michael I. Anstead, the Director of the Adult Cystic Fibrosis Center at University of Kentucky Healthcare. Not only did he go above and beyond to help me access ORKAMBI, he eventually came to be the first person on this journey who saved my life.
I was prescribed ORKAMBI for a few years, and though my health was still declining, the disorder advanced at a much slower pace. In fall 2018, I sadly succumbed to a severe lung infection, which dropped my lung capacity rapidly from 35 to 23 percent.
My Journey to Transplant Surgery
Due to the medical strike in South Africa in 2020, I was unable to have a necessary medication imported from France. Couple this with an antibiotic resistance, and I found myself at death’s door. I was terrified.
Even with the seven-hour time difference, Dr. Anstead worked remotely with my attending physician at home, prescribing a combination of antibiotics and therapies to try to stem the raging infection. With both pseudomonas and MRSA, I was without question, on the back foot (a British expression that translates to being at a disadvantage).
After many weeks of being unable to get out of bed and fully reliant on oxygen therapy, the infection subsided enough for me to take the 36-hour journey from Cape Town, South Africa to Lexington, Kentucky, where I was admitted into the hospital for over a month.
My recovery was lengthy and painful, the infection had irreversibly taken its toll. Dr. Anstead advised that it was time to consider a transplant assessment.
After research, consideration and discussion, I settled on Penn Medicine as my hospital of choice. After a comprehensive and intense two-week assessment, I was informed that not only did I require a double-lung transplant, I would also need a new liver. My liver, which was already in poor condition, was not likely to handle the intense medication regime post-transplant.
With this information, I flew back to Cape Town.
I consulted a few transplant centers in South Africa but found out that none had ever performed a combined double-lung and liver transplantation, as it is quite rare. My best chance for survival was to return to Penn Medicine in Philadelphia. Penn Medicine’s transplant institute had the experience I could trust.
A New Lease on Life Thanks to Penn Medicine
With my wife beside me, I returned to the US on February 28, 2019. We did not anticipate waiting for the call through a global pandemic. Since COVID-19 affects the lungs, I became housebound. Even after restrictions were lifted, the risk of exposure remained too great to re-join the world, and I did not want to jeopardize my chances for transplantation. Thankfully, I did not contract the virus and received the call exactly two years after the day I landed in the US. I became the 141st person in the US to receive this specific organ transplant combination.
Honoring My Donor, Living My New Life
Aside from some minor complications during recovery, the transplant was a huge success. There are no words to describe how incredible it is to breathe deeply without pain.
Each day I wake up and honor my donor. I have embraced life with passion. I cycle on my Peloton every day, and I’m studying for my GMAT to pursue my MBA. I remain steadfast in my mission to bridge the gap for CF patients in South Africa to easily access the knowledge and medical advancements of the First World.
I am so grateful for my donor family, the support of my friends and family, and, the medical expertise and care I received at Penn Medicine. Special thanks to Dr. Christian A. Bermudez, my lung transplant surgeon, and to the entire team at Penn’s Lung Transplant Program – especially my transplant coordinator, Jackie Golato, CRNP, for always being there to answer my questions. And thanks also to Dr. David Kaplan my hepatologist, and the entire liver transplant team that cared for me. And last but not least, Dr. Denis Hadjiliadis, the Program Director of Penn’s Adult Cystic Fibrosis Program who took me under his wing and guided me through the entire process.