The transplanting of an organ is a complex undertaking, where the generous and selfless decision of one individual and family has the potential to transform the life of another person through the gift of donation. For 21-year-old Naomi Lee, a recent lifesaving heart transplant not only ended her struggle with end-stage heart failure, but it has renewed her vigor for life and all that she holds dear.
When a flu virus circulated through the Lee household, no one thought much of it. As Naomi’s parents and siblings recovered, she continued to struggle with debilitating symptoms – dehydration, severe cough, shortness of breath and chest pain. Numerous COVID-19 tests came back negative. Finally, a trip to the emergency department gave Naomi a diagnosis of viral myocarditis and subsequent heart failure.
Life as Naomi knew it changed. To give her heart a chance to recover, she was implanted with a left ventricular assist device (LAD). An LVAD acts as a pump, lessening the burden on the heart.
After six months on the LVAD with no improvement it was clear Naomi’s heart was beyond repair. A heart transplant was her only hope for survival. This news was devasting. She remembers, “I was scared and didn’t believe that I would be able to have a happy or full life if I had a transplant.”
Connecting with other heart recipients through support groups was critical in changing her outlook. Naomi says, “I discovered that life does, in fact, go on after transplant. And not only that, but I could look forward to a fulfilling and beautiful life!”.
Undergoing a transplant during a global pandemic added another layer of challenge that Naomi and her family were forced to navigate, describing it as isolating in every sense of the word. Even now, as the general public looks to adopt a greater sense of normalcy, Naomi reflects on what this means for many immunosuppressed recipients, “Most people can relate with how lonely it was to isolate in the beginning of the pandemic, but that is the reality for many transplant patients still, even as many of the strict COVID protocols have been loosened for the general public.”
Despite it all, Naomi is making the most of her new heart, maximizing the joy she can fit into every day. Nine months post-transplant, she has plans to return to school part-time in the fall, enjoys visiting with friends, goes for daily walks with her puppy, and always takes advantage of an impromptu dance party.
Looking back on her experience, Naomi describes her journey from heart failure to transplant as one of the most difficult and terrifying challenges she has ever faced. But staring death in the face and confronting her own mortality has given Naomi a unique perspective on life. “I am much less concerned about the small stuff, and I am able to see the bigger picture,” she remarks. “I am much more aware of and thankful for my ability to move around, eat good food, sleep well, and enjoy life! Overall, I think these challenges have allowed me to grow in ways that wouldn’t have been possible without going through such an intense and painful experience.”
With a new heart and zest for life, Naomi is filled with optimism for the future. Prior to her illness she was planning to be an elementary school teacher but is now considering pursuing a career in healthcare. She says, “I think my experience would allow me to make special connections with patients and have empathy in a very unique and personal way”.
Naomi is also lending her voice to research. As a patient partner, she is using her lived experiences to shape and inform research projects, ensuring the areas of focus are relevant and meaningful to other patients. “The patient partner and healthcare team relationship is important because both sides bring a unique perspective to the table,” she adds. “The patient voice is extremely important because patients know their own body best, and their experiences are a valuable piece of information that can greatly enrich and shape research.”
Although Naomi has only been part of the transplant world for a short time, she is clear on what she wants to see improved, emphasizing, “I wish that transplant patients didn’t need to have life expectancy statistics hanging over our heads. I wish that transplant didn’t mean a trade of heart failure for life-long immunosuppression. I wish that transplant patients didn’t have to take toxic drugs every 12 hours for the rest of our lives. I wish that transplant patients didn’t need to worry about infection, cancer, or any of the many potential side effects of the drugs we take. While I am incredibly grateful to my donor, I hope that one day, transplant will be a cure, not just a treatment.” She also has a message for her donor, “Finding words to convey my gratitude is difficult. ‘Thank you’ doesn’t feel adequate in response to this selfless and life-changing gift. All I know is that without my new heart, I wouldn’t be where I am today, or living the life that I am able to now.”
To help make Naomi’s visions for the future of transplant a reality, donate to support organ donation and transplant research.