Transplant Caregiving is a True Team Effort

John and his wife continue to collaborate, helping other patients and caregivers.

Originally published in TransplantNATIONVol. 4, No. 2 PDF of original article here.

Written by John Gersh

On a hiking trip in the spring of 2006 my wife, Alice, found herself out of breath at the top of a steep hill and decided to skip the rest of that hike. We thought little of it at the time, but Alice has a family history of idiopathic pulmonary fibrosis (IPF), and concerns grew. Over the next eight years such incidents became more frequent and eventually she was diagnosed with the disease. There is no cure for IPF, and at the time there were few options for treatment. Alice had a fatal lung disease, one that can suddenly get much worse. In the spring of 2015, it did. Alice needed oxygen continuously, had little stamina, and her health generally declined. A transplant was the only option. She was finally listed for a lung transplant in July. I had become a full-time caregiver.

Alice hours before her life-saving lung transplant.

Caregiving entailed many things, some large enough to dominate one’s life, some small but memorable. The first included obvious things like managing oxygen deliveries and tank switching. It included some things not immediately obvious like learning how to provide the right level of emotional support. It meant being on call all the time. The small things included learning by trial, error, and correction exactly how Alice wanted her favorite breakfast of sausage and potatoes prepared, since she couldn’t do it herself. People may be demanding and grumpy as they lose their autonomy; caregivers learn that it’s not personal.

Caring for a transplant patient is a team effort. Alice and I were at the center; we faced the challenges together. We were surrounded by a wonderful group of relatives and friends: they stood in for me to give me respite; they brought meals and went shopping; they listened to my worries and Alice’s. At one point I needed outpatient surgery. The operation was minor, but it meant that I couldn’t drive or lift heavy weights for a month. What if we got “The Call” that a lung was available and we had to get to the hospital immediately? The team responded. We designated a backup crew, and they practiced all the steps involved in taking Alice to the hospital. As it turned out, the backup crew wasn’t needed, but having one was important to Alice’s care and to my own well-being. We were also supported by the transplant team at Johns Hopkins Hospital; they were a phone call away. Interacting with them was also part of caring for Alice.

By December 2015, Alice was doing very poorly. We couldn’t give her as much oxygen as she needed at home, and she was admitted to the hospital. I felt that this was it: she would come home with a new lung or not at all. On the morning of the second day there, the transplant surgeon came to her room and announced that a lung was available. (He felt that at that point she was too frail to endure the longer surgery needed to transplant both lungs.) By early the next morning the surgery was over. Two days later her oxygen cannula was removed. There was no ceremony, yet it was a milestone; there would be more challenges ahead, but I knew then that she would make it.

John and Alice reading to their granddaughter, four months after transplant. (Photo taken by Alice’s daughter, Liz Robinson)

Of course, caring for Alice didn’t stop; it just entered a new phase. Recovery was tough, but she remained determined. The care team was still needed, but gradually faded into the background. Caring itself also diminished as she could do more on her own. In August 2016, Alice threw a big party for all of the people who had supported her over the past year – the care team and more. She gave a nice speech thanking everyone and ended by acknowledging the person to whom she owed the most: her donor.

A couple of years later, we had an opportunity to give something back to the transplant community; we volunteered as mentors with the Lung Transplant Foundation, Alice for lung transplant patients, I for their caregivers. We became part of an even larger team and have found it rewarding to share our experiences and, we hope, helpful.

Caregiving teamwork stays with you. Every Saturday Alice and I team up to distribute into her pillbox the medications that keep her alive and healthy. A few months ago, Alice had some severe back pain and had to be taken to the emergency room. It resolved quickly, but in the moment, I found myself falling into what I call caregiver stance: only Alice’s situation mattered, other priorities diminished. Transport had to be arranged. People had to be notified. Medication had to be acquired. Meals had to be prepared. The team went into action, did its job, and stood down when the crisis passed. 

John GershJohn Gersh is a semi-retired engineer. He lives in Columbia, MD, with his wife, Alice. Alice had a single lung transplant in December 2015 at the Johns Hopkins Hospital in Baltimore, MD. John and Alice both like the outdoors, Alice knits, and John competes in Masters Track and Field Championships.

John and Alice Gersh are still active in the  Lung Transplant Foundation Mentorship Program six years after Alice’s lung transplant.