Finding Strength in the Unknown: Erin Rowland’s Lung Transplant Journey

When your health completely unravels, life can turn upside down in an instant. For Erin Rowland, a 54-year-old mother of five from Louisville, Kentucky, that shift marked the beginning of a complex, six-year medical mystery that ultimately led to a life-saving single lung transplant.

Today, Erin is sharing her raw, beautiful, and deeply personal lung transplant story. To dive even deeper into her incredible timeline, you can also read her featured piece in TransplantNation magazine.

Here is Erin’s journey, in her own words.

Life Before the Medical Storm

My name is Erin Rowland. I’m 54 years old and live in Louisville, Kentucky. I’m married to the single greatest human on earth, my husband Michael, with whom I share our five children, ranging in age from 13 to 27. After years in Energy Brokering, my husband turned 50 and became a middle school teacher. I brokered as well, for nearly 20 years, before being forced to retire due to illness.

I am a homebody, would trade an arm for a Trader Joe’s chocolate croissant, am learning to play chess, and bake constantly to satisfy my sweet tooth. I led an active, healthy, somewhat boring life for 38 years, before everything turned upside down.

Missing Pieces and Shifting Diagnoses

When I was cleared to resume exercise 8 weeks after the birth of our 4th child, I felt breathless and weak. I attributed it to having just had a baby and ignored my hypoxia and dyspnea, my lips often turning purple during strenuous workouts, for nearly two months.

With encouragement from Michael, I finally reached out to a pulmonologist who ran me through the ringer of testing, which showed nothing, sent me for a stint in cardiac (came up clean), and put me on several inhalers. Three months later, sick as a dog with the flu at an urgent care clinic, the doctor told me I was pregnant. For the next nine months, all testing was put on hold.

I delivered my son, Aeden, at 36 weeks, induced early for fear the strain of pregnancy might worsen what doctors still believed was a heart condition. Surrounded by 15 physicians and on 5L of oxygen, Aeden came into the world while everyone waited with bated breath for me to go into cardiac arrest. To everyone’s surprise, I did not.

One week later, I was subjected to a transesophageal echocardiogram, which showed a small hole in my heart. A right-sided heart catheterization followed, the first of its kind at Baptist East here in Louisville, as I was wide awake and sitting on a bike, pedaling, while measurements were taken.

Pulmonary Hypertension was the conclusion drawn, so I went on to have a chest CT, which showed unexpected and widespread scarring of my lungs. Testing of every type you can imagine followed, culminating in a biopsy of my left, more damaged, lung. Eight hours later, the surgeon told me I had 3-6 months to live.

Fortunately, my pulmonologist thought differently, contacted a lung disease specialist in Germany, sent my slides to her, and told me, 24 hours after that, good news, my condition was not fatal—not that quickly, anyway. Bad news? The left lung was no longer viable for transplant, having been stapled to my chest wall during surgery to keep it from deflating.

“It took years of testing and follow-up appointments with immunologists, cardiologists, pulmonologists, and transplant surgeons… to conclude that I had, in one doctor’s words, ‘a type of lung disease we don’t yet have a name for.'”

Adapting to a Failing Body

Over those six years, while everyone attempted to fix me, I grew weak. I lost 30 pounds, grew gaunt and gray, and lived with oxygen tubing and tanks and concentrators and masks. I participated in pulmonary rehab, but grew increasingly reliant upon more oxygen, eventually needing to wear a non-rebreather on 15L just to walk for 10 minutes.

I was encouraged to find a Transplant Center for listing. I visited several, but I was not ready. I thought I was fine. I had grown accustomed to the bones of my hips jutting out, my clothes hanging from my frame, my hair falling out, my energy sapped just by walking to the kitchen. Needing to change oxygen tanks, mid-car ride, became a funny joke that even my kids’ friends grew adept with. I adapted, but I was avoiding confronting the fact that I was dying.

Facing the Transplant List at IU Health Methodist

In May of 2019, I was placed on the Transplant List at Indiana University Health Methodist in Indianapolis. I was apathetic about the process, sometimes even argumentative and defiant about my being too healthy to subject myself to the risky procedure and the life that awaited me afterwards. I even declined the first lung offered to me and had to beg my way back onto the list IU removed me from when I did so.

Two dry runs later, I received a single right lung. It was a complicated surgery, and doctors encountered several issues during the 9-hour procedure. I was placed on ECMO, and my husband was told to be prepared that I might not make it. Clearly, I did, but it was not easy.

Dr. Roe, the director at IU Methodist Transplant, was a gift for my husband and me. Through my crazy hallucinations in the ICU, and my time in the step-down unit, when everyone but him was determined to get me off oxygen completely—despite having a left lung that no longer functioned at all left inside my chest, and a right lung that was trying to find a new home. Without him and the amazing ICU nurses, my caretaker Aunt Linda, and Michael, there would be no story for me to write.

For six years, I have been able to watch my kids go off to college, graduate from high school, complete elementary and middle school, have first dates, and get their licenses. Without my donor, I would have missed all of that, and I am eternally grateful to her and her family for the time I’ve been gifted.

Finding the Lung Transplant Foundation Mentorship Program

Through a Lung Transplant Support Facebook group, I found Carrie Chown. She had been a CF patient and recipient of a double lung transplant 15 years prior. She culled a group of us from the 7,000 members of the Facebook support group, and we started our own monthly Zoom meeting to swap stories, share tips, and encourage one another. It was through Carrie that I found the Lung Transplant Foundation, and I reached out immediately to learn about how I could get involved.

The Lung Transplant Foundation Mentorship program has been incredibly beneficial for me. Though I wish I had known about it while awaiting my own transplant, it is a gift each time I am allowed to mentor someone going through the same processes I did.

We each have unique experiences, of course, but I know first-hand that no one quite understands what life is like before, during, and after a transplant the way a fellow transplantee does. Being able to offer advice, a listening ear, and support to someone who has some of the same fears I once did—the same confusion and pain, the same reluctance—has allowed me to process some of the emotions I did not realize I had buried beneath a façade of jokes and self-deprecation. Following another person’s journey into what feels so unknown has encouraged self-reflection and led to growth I didn’t know I needed.

Become a Beacon of Support: Volunteer as a Transplant Mentor

Erin’s story reminds us that while the transplant road is filled with clinical milestones, the true healing happens through human connection. No one should have to face the fears, confusion, or emotional weight of a lung transplant alone.

Whether you are a recipient who wants to pay it forward or a caretaker ready to guide another family, your unique journey is exactly what a waiting patient needs to hear.

• Want to learn more? Discover how peer support transforms lives.
• Ready to make a difference? Apply to become a certified volunteer mentor today.