My role as caregiver started before the transplant

Hi! I’ve been asked to share some of my experiences as someone who has been a caregiver to a lung transplant recipient.

My name is Pete and I live in Durham, NC, with my wife of just over 18 years, Jen. During this time I have been personally involved in her medical care as she has cystic fibrosis (CF), which is a genetic disorder that affects the lungs, pancreas, and other organs, causing a build-up of mucus. In the lungs, this is particularly problematic as it clogs airways and leads to repeated infections, inflammation, and ultimately respiratory failure. There is presently no cure for CF, although recently there are new and promising genetic therapies that can greatly improve the health of those with CF.

Double lung transplant

As Jen’s health and lungs deteriorated we moved to Durham in anticipation of, and in preparation for her to be evaluated for a double lung transplant at UNC. Jen moved in January 2015 and I followed her in April 2015 (I needed to transition out of a business and sell our home in Aiken, SC). Jen continued to decline in health and she was listed for transplant in July 2016. Following 3 “dry runs” – where you get the call that there is a possible match for lungs, go to the hospital, and prepare for transplant only to be told that it wasn’t a match – Jen received her new lungs on December 14, 2016.

My role as a caregiver

My role as caregiver started before the transplant as Jen was in need of help due to the dire condition of her lungs – while in Durham she was on oxygen 24/7 and went through hospitalizations for infections and/or viral illnesses. Shortly prior to transplant, Jen was so weak that she had to crawl up the stairs in our home to get to the bedroom.

Following the transplant, the caregiving role kicked into full gear. In addition to the obvious, recovery from major surgery there is an entirely new pharmaceutical regimen, physical and occupational therapy, dietary demands for weight and strength – there is also an overwhelming amount of attention to detail required due to the danger of infection and sickness due to the immunosuppression drugs. What is preventing your body from rejecting the new lungs is also lessening the body’s ability to fight the myriad of bacteria and viruses that surround us every day.

There is simply no way to adequately describe and convey the journey of caregiving in a few paragraphs. Let me summarize my experience as a primary caregiver by saying that it was as demanding, and on some level rewarding, of a responsibility that I have shouldered, so far, in my life.

Now, nearly three years out from transplant, Jen and I are able to turn our attention to getting our lives back on course as a couple, not caregiver and patient. When asked how Jen is doing, one of our standard responses is, “so thankful to be alive, so very, very appreciative for the donor family, and working hard to stay healthy.”

Part of that work is supporting the Lung Transplant Foundation. Jen presently serves on the national board and is the executive director of the NC chapter. There is a great need to support and fund research so that the outcomes for those who have gone through a lung transplant can improve and survival rates can be extended beyond what we have at the present time. Jen and I are thankful for the work that the Lung Transplant Foundation is doing.

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis, and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Jen and Pete. Make a donation or learn more about how you can be involved.