At age 40, I began to experience Dyspnea and Hypoxia with mild exertion. Having been an active and fit mother of 4 and never ailing from much besides a cold, I ignored my symptoms for months. By the time I saw a physician, I was pregnant with my 5th child so any and all testing to discover what might be plaguing me ceased. After my son’s birth, however, I became a lab rat of sorts, going through a full round of testing through Cardiology and Pulmonary groups local to me here in Louisville. I visited Mayo, I visited the Cleveland Clinic, I saw doctor in St. Louis at Barnes and the Team at Vanderbilt. I suffered many full pneumothorax – where my left lung would wholly collapse – without feeling any difference in my breathing. After a lung biopsy, a subsequent biopsy, a pleural tent, multiple stints in the hospital, and trying several drugs to treat Pulmonary Fibrosis – which physicians knew I was not suffering from – I went to see the Transplant Team at IU Methodist in Indianapolis. They determined my lung function to be somewhere in the low 20% and began the workup to have me listed for lung transplant.
In May of 2019, after a year on 24 hour oxygen, and having lost almost 30 pounds due to the tachycardia caused by my decreasing lung function, I was listed for a single lung transplant at IU Methodist. I had 2 “dry runs” – the Team calls you and tells you there is a lung, you drive to the hospital, they prep you, and then you learn the lung was not suitable for you – before the call at 9 pm on August 19th, 2019.
The surgery didn’t begin until August 20th and lasted more than 6 hours longer than the 4 the Team had predicted. I had to be put on ECMO and nearly died. My left, wizened and shrunken and non functioning lung, had to remain in place as it was too attached to my overworked and enlarged heart. So my right lung, the only one providing me oxygenated blood, was transplanted.
As for most transplant patients, I experienced issues while in the ICU and stayed longer than expected, but was finally released to the local Indy area for the mandatory 5 weeks of rehab through their system. My husband traveled back and forth between Indianapolis and Louisville, trying to care for both me and our 5 children. My Aunt Linda flew in from Denver and was my caretaker from the moment I woke up after surgery, acting as my very own nurse (a career she’d practiced for 20 years). I don’t know what I would have done without her, and cannot imagine the angst and fear she and my husband both faced in those dark hours.
My kids came to visit me, but that many people in a Transplant unit is frowned upon, so it was only one time. I was released from rehab and was reunited with them in October 2019. It felt so good to be home.
Being a transplant patient – and everyone has heard this – comes with a huge burden; you essentially trade one disease for another. But because of the selflessness of my Donor, whose family I contacted and have heard back from now, I am alive and have been here to see so many things most didn’t think I would live long enough for.
Network for Hope provided me with an opportunity to give back to the Transplant community through its outreach programs, which is yet another gift for me. Nothing can take away the guilt us transplants leave the hospital with: someone had to pass, a family had to experience an unimaginable tragedy, for me to live. Giving back through Network for Hope, however, allows me to feel empowered to help others and to use action to offer my gratitude for the greatest gift ever.
Erin Rowland is from Louisville, Kentucky.
