|I was an extremely active and fit mother of 4 when I started to realize something was wrong. I turned blue with exertion and, once I started monitoring my oxygen saturation, noticed I was desaturating into the 80s with any kind of exercise. It took many months of rigorous and sometimes painful testing, two biopsies, 4 hospitalizations, and traveling to clinics near and far before I was diagnosed with “rare” lung disease…that doctors couldn’t name. Lung disease is often misdiagnosed and sometimes dismissed when the patient looks like me: a 40-year-old otherwise completely healthy woman who presents, outwardly, like someone decidedly not in need of medical assistance.
Fortunately, I aligned myself with the best Pulmonary practice in Louisville and the best physician, Dr. Subin Jain. With his assistance and guidance, we navigated the often complicated world of diagnoses, insurance, oxygen needs, and rehabilitation. I remained stable for several years before my disease rapidly progressed to the point I needed oxygen 24/7. It was then that I began the work-up process at various transplant clinics.
Lung transplant workups usually take between two and five days, require overnight stays if the clinic is out of town, and leaves the patient feeling exhausted physically and emotionally. My caretaker – my amazing husband – never left my side and researched relentlessly the questions he had that even physicians were hard-pressed to answer. There may be nothing scarier than knowing your impending death is near and that doctors at the top of their field didn’t quite know how to save you.
I decided finally to be listed at Indiana University Methodist Hospital in Indianapolis due to its proximity to our home in Louisville and also the outstanding medical staff there. Truth be told, two other transplant clinics had declined to take me on as a patient, considering my case too risky.
During the workups I’d undergone, it was discovered that I had a small hole in my heart – a very common occurrence known as a PFO, but one that was potentially dangerous for someone with my damaged pulmonary capacity. They found that I had chronic blood clots in both arms and legs, likely due to an inherited blood clotting disorder called Factor V Leiden. These health hazards, coupled with the fact that my left lung had been stapled to my chest cavity during one of my biopsies to keep it from deflating meant I was the trifecta of transplant risks. IU Methodist was the only hospital near me that would take on my case.
I was listed in May of 2019 and transplanted with a single right lung in August of 2019. I was fortunate that I was not hospitalized prior to my transplant but spent those months in between listing and transplant in the comfort of my home, surrounded by my (now) five children. When I got “the call” that night in August I said goodbye to my children, all of us crying, not knowing if I would ever see their faces again. My eldest daughter, not one for tears, held her hand up to the car window as we pulled out and whispered “don’t die, Mom.” It was a quiet ride to Indianapolis that night. My husband and I had already said all there was to say to each other. Everything was in the hands of my surgical team at the transplant clinic. The moment I slipped off my wedding ring at the entrance to the OR and handed it to my crying husband is one I will never forget.
I have been a registered organ donor since I got my license at 15 in Boston, Massachusetts. There was never a doubt in my mind that, should my life end abruptly, my organs should be harvested and donated. It never occurred to me that everyone didn’t share my same belief. Waiting for a transplant during the summer of 2019 left me with time to research how many patients died waiting for an organ every year; how many people refuse to register as organ donors and the various reasons why. I even lost a friend to ALS the year before I was listed who was buried with all of her organs. It baffled me, especially as my clinic visits became more regular. I lost so much weight that the seriousness of my illness was known to anyone who saw me. How could they see me and not realize how precious what they carried inside them every day was and how useless it was to die and not give those precious gifts away?
As I approach my two-year Lungiversary, it is my utmost belief that hearing my story – and those who have been transplanted like me – can change a person’s mind and heart about organ donation. I have been given two extra years to celebrate birthdays with my children and husband, to watch them become their own people. I feel such gratitude every day for the gift of my donor. I only wish I knew more about them.
Organ donation saves lives. It saved mine. Try asking my children and husband how important that is.