‘It hasn’t been easy, but I am here to breathe deeply and live in the moment.’
Genevieve Hughes, 54, lives in Hampton, Virginia with her husband Kristian. They have four children. Genevieve is director of religious education at the Joint Base Langley-Eustis Regimental Memorial Chapel in Newport News, Virginia. She shares her transplant journey with the Pulmonary Hypertension Association’s Right Heart Blog for Donate Life Month in April.
By Genevieve Hughes
Turning 50 was on the horizon, but a month prior, I found myself in the emergency room complaining of shortness of breath.
I thought I was just getting older and out of shape. I talked the ER doctor into letting me follow up with a physical at my next doctor’s visit. I did just that, and my doctor ordered tests to look for the cause of my breathing issues.
As a former athlete and swimmer, it was hard to experience limiting health issues. After a battery of tests, I was diagnosed in December 2015 with idiopathic pulmonary arterial hypertension (IPAH). I learned that I would need a double-lung transplant within five years.
At the time, a close friend who was with me gave me support. She said that when people asked how I was doing, I should respond, “I am making heart failure look good.” That motto and my friends and family journeyed with me toward transplant.
Even with the discomforts of PH, I continued to work. As a program director for a U.S. army chapel, I found that my work in pastoral care helped keep my mind off my own issues. As a mother to four children, the youngest being 12, I stayed motivated toward getting that transplant.
In May 2019, I was accepted into the lung transplant program at Duke Medical Center in Durham, North Carolina. I relocated to Duke with one of my daughters as my caregiver, and I started preparing for transplant. It was hard participating in daily pulmonary rehab classes.
I soon was listed, and in August, I received the call. After 18 hours of surgery, I was placed on an extracorporeal membrane oxygenation machine so my heart could have time to heal. PH had caused my heart to enlarge and become more rigid.
Getting my body used to the new lungs was imperative to a successful recovery. After four weeks in the hospital, I was released for four weeks of pulmonary rehab. Learning to live with these new lungs was a job in itself. Medication, diet and exercise all were integrated into my life and became my new normal.
It hasn’t been easy, but I am here to breathe deeply and live in the moment. To date my greatest accomplishment has been to attend my son’s football games in his senior year of high school. I felt like Rocky as I climbed the steps to my seat in the football stadium.
With PH, I could barely walk to the stadium gates.
Since my transplant, my daughter is engaged, one son is preparing for college, and another son is getting ready to go to high school. I can fully engage in the lives of my family. My husband and I travel to Duke for bronchoscopies and monthly check-ups with my transplant team.
I owe so much to my donor for the gift of life. Hopefully one day I will have an opportunity to acknowledge my donor’s family. Until then, it is my goal to glorify my donor’s life by living mine as fully as I can. I am so thankful for my PH doctors, nurses and transplant team for their excellent care.
Learn how you can get involved for Donate Life Month. Read other transplant journeys in the Right Heart Blog.