Living with Limits
Most of Dedra鈥檚 life was spent on the sidelines. She was diagnosed with cystic fibrosis 鈥 an inherited condition that causes mucus buildup in the lungs, and often leads to infections and damage to multiple organs, including the lungs, over time 鈥 at an early age, and has long had to watch others enjoy things that just weren鈥檛 possible for her to do.
鈥淚 got left out of a lot of things as a kid because it was hard to breathe,鈥 said Dedra. She spent a lot of time getting breathing treatments, and as she got older the condition progressed. In her teens, Dedra noticed her health declining and the treatments didn鈥檛 work as well. She discussed it with her pulmonologist, and learned that she would likely need a lung transplant at some point in the future. She continued to see specialists, and they did what they could to help Dedra manage her symptoms, changing medications as new research came out and new treatments became available. It helped some, but eventually each new treatment would become less effective at controlling her symptoms.
By the time Dedra was in her 30s, she needed regular 鈥渃lean out鈥 visits that required long hospital stays. During these visits, she would spend about two weeks in the hospital getting antibiotics to clear out infections in her lungs, pancreas, and other organs. As these hospital stays became more frequent, she and her doctor started discussing the possibility of lung transplant again and she started seeing a pulmonologist at 香蕉视频 of Utah Health.
鈥淭he doctor told me I would need a double lung transplant, and both lungs would need to come from the same donor,鈥 said Dedra. That meant she would not be eligible for a living lung donor and would need to wait for a deceased organ donor who was a good match.
The process for organ donation is extensive, involving months of testing to ensure the recipient is in good health, and to find the right match between donor and recipient. Finding a lung donor can take anywhere from a few months to several years, depending on multiple factors. Not only do doctors need to match blood type, they also evaluate things like the size of the recipient鈥檚 chest cavity (to ensure a good fit), total lung capacity, and the severity and type of lung disease.
The Turning Point
The (OPTN) recently changed the way it allocates available lungs, now using a composite allocation score (CAS) to ensure equitable distribution and help get lungs to those with the most acute needs. The new allocation system has led to a 26.1% decrease in candidates removed from the waiting list due to death or being too sick to transplant.
However, when Dedra was waiting for her transplant, these rules had not yet gone into effect. She doesn鈥檛 remember exactly how long it took to find a donor, but the testing lasted more than a year and her name was on the waiting list even longer. Her mother was her primary caregiver, and when she entered the transplant program at U of U Health, Dedra was also assigned a care navigator who was part of the team of transplant experts. The navigator was there to help Dedra understand what the whole process would look like, including the testing, donor matching, surgery preparations, and recovery following the procedure. They could also connect her with necessary resources and services along her transplant journey.
In the midst of the testing and waiting for a donor, Dedra suffered a medical emergency. She passed out and was taken to the ER, where doctors evaluated her condition and admitted her to the hospital.
鈥淢y condition was declining, and my lungs were shutting down,鈥 Dedra recalls. 鈥淚 couldn鈥檛 be out of the hospital on my own, so I had to stay there as an inpatient until they found a donor. It was scary not knowing whether they would be able to find a donor match in time, or how long I might be in the hospital.鈥
About two months later, they found a donor and the surgery date arrived. Dedra doesn鈥檛 remember much; she was sedated most of the time and on supplemental oxygen, in and out of consciousness in the hospital. She remembers being wheeled down to the operating room and the nurses telling her it was the day she would get her new lungs.
Her transplant surgery happened in January 2020, right at the beginning of the COVID-19 pandemic, so for most of her recovery Dedra wasn鈥檛 allowed to have many visitors. Her parents were allowed to come to the hospital on the day of the surgery, but future visits were limited to just one hour a day due to COVID protocols. Fortunately she had several hospital 鈥渘eighbors鈥 who were also staying long-term and they all became close and encouraged one another through recovery during a very stressful time in healthcare.
The surgery went well, but the recovery process wasn鈥檛 quite as smooth. Dedra鈥檚 body was rejecting the left lung, and she had bleeding on one side, and surgeons couldn鈥檛 figure out why. She had to go back into surgery to fix that, while her doctors continually adjusted her medications to address the potential rejection.
Once she was stabilized and her body was accepting both transplanted lungs, she started rehabilitation. That included physical therapy and occupational therapy to re-learn how to do things like walk and eat with her new lungs. About five months after the transplant, Dedra was ready to go home.
鈥淚 had been on supplemental oxygen for so long that I forgot what it was like to be able to breathe without it,鈥 said Dedra. 鈥淲hen they took the breathing tube out I immediately thought, 鈥極h, I can breathe!鈥欌
Breathing Free 鈥 and Looking Ahead
Suddenly she was able to do activities she had been avoiding for years, especially those that would require her to be away from home for several hours. 鈥淚 used to have about a two-hour limit for activities I planned because that鈥檚 about how long a tank of oxygen lasts. It was such a hassle to take multiple tanks with me and switch them out that I would just avoid anything that lasted more than a couple hours,鈥 said Dedra.
Because of the timing of her surgery 鈥 her discharge occurred around May of 2020, when the world was basically on lockdown for COVID 鈥 her social life didn鈥檛 immediately open up. But as COVID restrictions eased, she went back to some of her favorite activities, like bowling night with friends.
She credits an amazing transplant team at U of U Health with helping her through the entire process, and continuing to provide exceptional care today.
鈥淚t was a long process, but to anyone who knows they will need a transplant in the future or is going through the transplant process now, don鈥檛 give up,鈥 said Dedra. 鈥淚t鈥檚 very tiring, it鈥檚 hard, but it鈥檚 definitely worth it. Think about all the positive things that could be on the other side.鈥