Our Journey Through Lung Transplant: A Patient’s Story

Lung transplant and COPD: recipient Pat Gutekenst with UVA Transplant Center nurse practitioner Shawn Floyd
Lung transplant recipient Pat Gutekenst (right) with UVA Transplant Center nurse practitioner Shawn Floyd at a recent follow-up appointment

Louisa County resident Pat Gutekenst battled chronic obstructive pulmonary disease (COPD) and had a lung transplant at UVA in 2015. He and his wife, Stacey Gutekenst, contributed this post.

Our journey began many years ago when I was referred to a great pulmonologist who was not only a physician but a coach. He offered moral support and became a friend who was willing and able to work with me through my darkest days. Eventually he was able to help me quit smoking and stay nicotine-free for the first time in nearly 50 years, which was no small challenge. With that accomplished, he referred me to the UVA lung transplant program in December 2013.

Getting on the Lung Transplant Wait List

I dragged my oxygen concentrator and wore my nasal cannula as my wife and I had our first of many visits with Heidi Flanagan, lung transplant nurse coordinator. Wow, that seems so long ago!

Throughout the extensive testing and re-testing, Heidi offered encouragement to both Stacey and me. During the dark days of doubt and “when is enough enough?” Heidi was always there with encouragement and support to both of us. It became a long and tedious road, and without a committed partner and teammate I would never have been successful.

Finally, in November 2014 I made the lung transplant waiting list! That didn’t mean the end of the testing or the physical therapy or the meetings with the support members. Everyone made sure my status was constantly monitored for the slightest changes and updating the United Network for Organ Sharing, which maintains transplant waiting lists.

The Transplant Surgery

Fifty weeks after making the list and one “dry run” (when I got called in but the lung transplant didn’t work out) later, I received that call: “Hi Pat, we have new lungs for you; are you ready?” Oxygen in hand, off my wife and I went, speechless yet encouraging each other all the way to the hospital, where the transplant team was waiting for us.

The next few days were more difficult for my wife than me, but brief moments of clarity told me all went well. On a lighter note, I do remember being in a near panic when I realized I wasn’t wearing my nasal cannula — I didn’t need it anymore. The nurses and my wife knew how to humor me and calm me down.

After Transplant: More Anniversaries, Birthdays and Snowplowing

It seemed like days before I could admit that yes, I really did have the transplant! Two years later, with a few “bumps in the road” in the rear view mirror, I can say life is good! I’ve had two more anniversary dinners with my family, two more birthdays and even two more snowplowing seasons.

Throughout the journey, a team of doctors, nurses and pharmacy, dietary, financial and social support staff helped and supported us on every conceivable issue. Hannah Mannem, MDwho came to UVA later in my transplant recovery, helped me through a serious issue and was always updating me.

Rachel Anderson, RN, was always there with a warming laugh and bright smile. She never let me slip into a funk and made herself available to Stacey.

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Max Weder, MD, and Sarah Kilbourne, MD, never wavered in their determination to find solutions to my bumps in the road, both pre-and post-transplant; they never gave up on me nor would they let me or us give up.

Heidi and others kept our spirits positive during the long months of testing and retesting, then the never-ending wait once on the wait list.

My only big problem is finding a way to say thank you to each and every UVA employee who made this all possible, even those who visited every day at 4 a.m. with sharp needles! Thanks!

I would be remiss if I didn’t say a heartfelt thank you to the family who made the conscious decision to give me a second chance at life in the midst of their loss. My gratitude is limitless.

Comments (1)

  1. Dick Aitro says:

    Great and moving story. Hope you continue to remain healthy

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