My Son’s Transplant Experience Taught Me That Practice Makes Perfect

Colleen Steele avatar

by Colleen Steele |

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Due to pulmonary hypertension (PH), my son was on the transplant list for almost a year when he received the call that a heart and lungs were available. We were prepared for an out-of-state transplant, with packed suitcases by the door and two different med flights on speed dial.

Nervous excitement quickly turned to panic when our calls were answered with deep regrets that there weren’t any med flights available. Given an eight-hour window to get to the out-of-state hospital, we quickly switched to our backup plan and booked a flight with a commercial airline.

My husband and other son were staying home to tie up loose ends, and would take a train and join us the next day. With oxygen and suitcases in tow, and pushing my son’s wheelchair, I headed into the airport praying that his medical needs and concerns weren’t going to be an issue. Thankfully, the woman behind the counter was compassionate and provided us with the extra attention that we needed.

Fire and rescue personnel arrived to evaluate the situation. To our surprise, one of them was the father of one of my son’s friends. Seeing a familiar face was an enormous relief! My son’s oxygen needs and other medical concerns were addressed, and finally, we boarded the plane with assistance from our friend.

The Alaska Airlines pilot delayed the flight to make sure we made it aboard, and the passengers were just as supportive and kind. We were met with smiling faces, good wishes, and an unforgettable opportunity to witness humankind at its best.

We arrived at the hospital on time and full of hope. My son, however, expressed a feeling that the transplant might not be a go. His dad was experiencing an uneasy feeling, too. They seemed to share a premonition that I simply wouldn’t allow myself to consider.

He was taken into the operating room at 10:30 a.m., and at 12:30 p.m., I was informed that a visual inspection of the donated organs showed they were considered not sufficiently viable for transplant. In the transplant world, this heartbreaking experience is referred to as a “dry run.” Reducing an experience that was meant to save my son’s life to a “practice” was devastating. How was I going to tell my son?

As it turned out, he was still awake and aware when it was determined that they would not proceed. At the doors of the pediatric intensive care unit, his surgeon stopped to console me. He commented on how impressed he was with my 14-year-old’s ability to advocate for himself and handle such disappointing news with great maturity. My son met me with a shrug of the shoulders and a grin, and simply said, “I guess I’ll go back to playing the Wii U.”

I left to collect our belongings from the waiting room but got lost in a hospital that I could normally roam with my eyes closed. Two fellow PH moms found me dazed and wandering the halls. I hadn’t eaten or had anything to drink or closed my eyes in over 18 hours, and I was under emotional stress. I was unwell. My friends took me out to eat while my son rested, and I learned the importance of taking care of the caregiver.

A few months after the dry run, my son received a successful heart and lung transplant. At the time of the failed attempt, it didn’t make sense that we would be put through the trials of a dry run. Now I see it as a gift of surprising value. Our family gained important insight into our future that day, and we were better prepared when he received the second call. My heart aches for the loved ones of the person who died the day of the dry run and whose gift of life was supposed to save my son’s. We remember and give thanks to that soul, as we do to the person whose organs he eventually received.

If you are listed for transplant, keep in mind that dry runs do happen, and if you have one, make the most of it. Don’t waste the gift of experience. Shed some tears, but then take a deep breath and some mental notes of what went right and what could have gone better, so that maybe next time, it will.

Living with PH gave my son a perspective on life that takes many a lifetime to realize. He hopes for the best but prepares for the worst, and manages disappointments and challenges with a cool head and sense of humor. He has taught me that you can either let the dry runs in life defeat you or use them to make you stronger. Which will you choose?


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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