A double-lung transplant not only gave Jennifer Ellis a second chance at life, but it also led her to her future husband. After being introduced to the brother of her organ donor, Travis Ellis, the two quickly became friends. Their relationship continued to develop into the unexpected love story it is today. Jennifer says this wouldn’t have been possible if Travis’ sister, Jill Ellis, hadn’t generously decided to become an organ donor.
“Becoming an organ donor saves lives. It allows others to create memories they wouldn’t have if it wasn’t for organ donation. Without my donor, I would have never met the love of my life,” says Jennifer.
Shortly after Jennifer was born, her family learned she had a rare genetic condition called situs inversus, where organs in your chest and abdomen develop in a reversed anatomical position. “My heart, stomach and spleen are on the right side instead of the left, and my gallbladder and liver are on the left instead of the right,” explains Jennifer.
People with this condition may not experience any symptoms or complications. However, situs inversus is frequently seen in a disease called primary ciliary dyskinesia, which Jennifer also discovered she had following frequent sinus infections growing up. Primary ciliary dyskinesia affects cilia, which are tiny hair-like organs that help your body clear mucus – leading to recurring respiratory infections.
“I was constantly sick growing up with pneumonia, asthma, sinus and ear infections,” says Jennifer. “After I was diagnosed, we were able to start preventative treatment. But we ultimately knew a lung transplant could be a possibility in my future.”
Jennifer says she fell in love with her biggest hobby after signing up for her first pageant. In 2015, she was Ms. West Virginia America. (Courtesy: Jennifer Skaggs)
Jennifer, a former Ms. West Virginia, started noticing her condition worsen in 2015 when she was preparing for the Ms. America Pageant. While exercising, she struggled to catch her breath. A few years went by, and she eventually needed oxygen around the clock to breathe. Jennifer also had to undergo multiple hours of breathing treatments each day.
“I was very active before this, but that had to stop because it got to the point where I was constantly hooked up to machines. I couldn't really go anywhere except for the doctors,” says Jennifer, who had a busy social life and enjoyed volunteering in her community before her condition worsened.
In 2018, Jennifer says she was hospitalized 10 out of 12 months. It became clear she needed a double-lung transplant. Her local doctor referred her to Cleveland Clinic, where she was placed on the transplant waiting list.
“One day, my youngest nephew told me he couldn’t wait until I wasn’t sick anymore so I could play with him. That just hit me. From then on, I knew I was going to have this transplant no matter what,” says Jennifer.
While on the transplant list, Jennifer continued struggling with frequent lung infections. At times, she would get so sick it wasn’t clear if she’d be eligible for transplant. But after a few months of waiting, Jennifer received the call lungs were available. “When I found out, I immediately fell to the floor and started crying,” she recalls.
The day after that phone call on Sept. 15, 2019, she met her clinical team in the operating room, including Kenneth McCurry, MD, a cardiothoracic surgeon and surgical director of Cleveland Clinic’s lung transplant and heart-lung transplant programs.
"Lung transplants are complex but prove even more challenging in patients with situs inversus, where the anatomic right lung is on the left side, and the anatomic left lung is on the right side,” says Dr. McCurry. “It's vital patients like this are treated at a high-volume center, like Cleveland Clinic, where we perform cases like this more often and offer a multidisciplinary approach from the latest surgical techniques to post-operative care, and the success rates for patients are high."
Through the ups and downs, Jennifer says she’s remained positive and is always looking for the good in every situation. Jennifer’s family also offered support throughout her journey. (Courtesy: Jennifer Skaggs)
The procedure went well, but what followed was a long road to recovery for Jennifer. She began struggling with transplant rejection, which occurs when the body’s immune system attacks the transplanted lungs because it interprets them as foreign invaders. Jennifer ultimately had chronic rejection, which can impact lung function. She worked with her care team to build up and maintain her lung strength through breathing treatments and medications.
“Following her transplant, Jennifer has taken such good care of herself by living a healthy lifestyle and being compliant with her therapies. In turn, this decreases the amount of inflammation, which allows for lung function to be maintained,” says Marie Budev, DO, Jennifer’s pulmonologist and the medical director of Cleveland Clinic’s lung transplant and heart-lung transplant programs.
“Even though I have decreased lung function right now, I'm 100% better off than I was before. I couldn't even take a shower without oxygen leading up to my transplant,” says Jennifer. “Now, I'm enjoying life and not having to miss out on time with friends and family because I’m sick.”
Jennifer says she’s thankful to her donor, Jill, whose family first reached out to her by sending a holiday card after her transplant. Jennifer replied with a six-page letter that included messages from both Jennifer and her loved ones, expressing their gratitude. After getting to know each other more, Jill’s family eventually traveled from Wisconsin to West Virginia to see Jennifer in person. That’s when she met Travis.
“When I met Travis for the first time, I thought he was cute as could be,” says Jennifer. “But I never thought in a thousand years it would turn into anything. It wasn't even an option in my head because of the distance.”
Jennifer says Travis wanted to make sure she knew how committed he was to her and proposed in July 2023. (Courtesy: Kandace Kincaid)
From that first meeting, Jennifer recalls feeling an instant connection with Travis and his family. She was soon invited to more get-togethers. Travis and Jennifer then started taking turns, making the trip to continue seeing each other. When they weren’t together, Travis kept in close contact with Jennifer and updated his family on how she was doing.
“Whenever she was at the hospital, I would check on her so she didn’t feel lonely. Everything just happened naturally,” says Travis.
As they got closer, Jennifer says she made it clear she needed to stay in West Virginia to be near Cleveland Clinic. Travis was willing to make the move, and he proposed to her in July 2023. Jennifer replied with a resounding, “Yes!”
While organizing the guest list for their wedding, Jennifer knew she wanted Dr. Budev to be there and invited her as the guest of honor.
“From the beginning, I felt like everyone I encountered at Cleveland Clinic took a personal interest in my case. I have such a great team, and I can't speak more highly of Dr. Budev. She’s become like family to me,” says Jennifer.
Dr. Budev adds, “I'm so fortunate and honored to be part of Jennifer’s care. I have always admired her from the day I met her because she was always so kind and open. When Jennifer asked me to be the guest of honor at her wedding, I was so flattered. But the real guest of honor is her donor, and she’ll be there with us in spirit.”
Jennifer says Dr. Budev makes it feel like she’s her only patient and is always responsive to her questions and concerns. (Courtesy: Jennifer Skaggs)
Jennifer echoes Dr. Budev, saying none of this would have been possible without her donor. Jill’s family also finds comfort in knowing her daughter’s legacy lives on through Jennifer and the five additional lives she saved by becoming an organ donor.
“I’m grateful my daughter loved people, and she was willing to help anyone even in death. I’m also grateful God and Jill brought us Jennifer. Not only is she breathing with Jill’s lungs – she's also my daughter-in-law,” says Teresa Karl, Jill’s mom.
Randy Ellis, Jill’s father, adds, “We lost a daughter, but Jenny gained her life. Becoming an organ donor gives somebody else a chance to live. It changes people's lives.”
Jennifer stays in close contact with Dr. Budev and promptly speaks up if something doesn’t feel right. By being proactive, Jennifer’s lung function continues to improve, and she remains off oxygen.
Jennifer is motivated to stay strong and live the fullest life she can with the gift of Jill’s lungs. Since transplant, Jennifer says she’s been able to watch her nieces and nephews grow and be there to hold her grandmother’s hand when she passed away.
Jennifer and Travis got married in September 2024. She looks forward to creating new memories with the love of her life. (Courtesy: Karen Akers)
“I encourage all families to talk about organ donation. I hope people don't have to face this decision. But if you do, you want to be as prepared as possible and knowing what your loved one wants is crucial. There are so many avenues to sign up to be an organ donor,” says Dr. Budev.
Jennifer adds, “By becoming an organ donor, Jill saved six lives. That to me makes her a hero, and who wouldn’t want to do that? What better way to have your legacy live on.”
Related Institutes: Respiratory Institute