In the summer of 2010, Nancy Matthews and her daughter Hannah traveled to Nancy’s hometown of Jackson, Wyo. They spent time with family, visited Yellowstone National Park, and hiked in the mountains — a seemingly typical vacation, but not for Nancy.
“I never thought I’d see those mountains again,” she says.
The Challenge: Cystic Fibrosis
Nancy was born with cystic fibrosis (CF), an inherited chronic disease that affects the lungs and pancreas. When she was diagnosed with CF at age 6, her lungs were uncommonly healthy for someone with the disease.
Doctors called Nancy their “Miracle Mountain Baby,” giving at least partial credit to the
high-altitude, low-pollution environment that made her lungs work harder and stay cleaner.
The defective CF gene that causes the body to produce excess mucus had so far spared her lungs, but was blocking Nancy’s pancreas from helping to digest food.
Treatment with enzymes resolved Nancy’s digestive problems, and she enjoyed an active childhood. She remained almost symptom-free until her freshman year at St. Bonaventure University, when CF began to take its toll on her lungs. Over the next decade Nancy suffered two collapsed lungs as well as numerous infections, hospitalizations, surgeries, and other complications, including CF-related diabetes.
Despite her medical hurdles Nancy married, earned a master’s degree in counseling, and gave birth to a healthy baby. The same year Hannah was born, Nancy began working as a disability counselor at St. Bonaventure.
By 2007, however, her health had declined so severely that she was given two years to live without a double lung transplant.
“I was blown away,” says Nancy. “I didn’t know I was that far gone. I had to come to terms with giving everything up.”
Nancy’s condition forced her to resign from the job she loved. She could not even leave the house without a wheelchair and a supply of oxygen.
“[I had to] place the care of my family and home into the hands of others,” Nancy recalls in a video she made about her experience. She began to prepare herself and her loved ones for the end of her life.
The Path to the UPMC Lung Transplant Program
Nancy’s case was considered high-risk because she had contracted B. cepacia. This type of bacteria poses little risk to healthy people, but causes severe infections in those with immune system or respiratory problems, particularly CF patients.
CF patients who contract B. cepacia can never completely clear their bodies of it; they must take extra precautions to avoid “flare-ups” of B. cepacia lung infections, as well as transmission of B. cepacia to other CF patients.
The transplant center recommended by Nancy’s health insurance carrier does not perform transplants on patients with B. cepacia. In fact, Nancy was told, only two centers in the United States do, one of which is UPMC.
The Solution: Double Lung Transplant
Nancy was placed on the transplant waiting list in May 2008, and received her double lung transplant on Dec. 10 of that year. The months between were filled with uncertainty and travel between Pittsburgh and Nancy’s home in Westons Mills, N.Y.
When she wasn’t in the hospital, Nancy often found a home away from home in Family House, an organization that provides lodging for out-of-town, seriously ill patients and their caregivers.
Nancy recorded her impressions of Family House in her blog:
“From the outside this just looks like an ordinary apartment building, but inside, it is so much more . . . Everyone has a story that they want to share and others are eager to listen.”
At Family House, Nancy befriended other transplant patients, and keeps in touch with many of them today.
Nancy’s parents left Wyoming to help with Nancy’s care while husband Scott continued to work.
“My parents were great,” Nancy says. “They would not just let me sit around. They would take me out somewhere, and then we would take the next day off so I could rest.”
Some days when they didn’t go on outings, Nancy enjoyed praying in the hospital chapel or spending time in the Blair Crawford Courtyard Garden (they called it “the secret garden”). Also during this time, Nancy began writing her second book: a guide to coping with chronic and terminal illness.
When the call came, Nancy and her parents had just moved into a rental apartment in a Pittsburgh suburb. Nancy’s husband and daughter would now have a place to stay during visits, and especially with winter snow on the way it was best to be close to the hospital.
The transplant went smoothly, and after two weeks recovering at the hospital Nancy was able to go “home” to the apartment on Christmas Eve.
At first, recovery was a rough process.
“It took me a long time to regain muscle strength,” Nancy remembers. “But having been in the hospital [so frequently], I knew it would take my body a while.”
It was the mental and emotional changes that caught Nancy off-guard.
“I hadn’t been able to do anything for myself,” she explains. “I spent at least a year literally dependent on someone else for everything. Back then, I had to adjust to giving up control. I had to take [these daily tasks] back and know I could do them.”
Nancy found that her post-transplant depression may have been related to side effects of antirejection drugs that organ recipients must take for the rest of their lives.
“I kept thinking, ‘What is wrong with me? I’ve been given a beautiful gift and I’m a mess!’”
She encourages other transplant patients to talk to their transplant team about going on an antidepressant if they experience severe anxiety and depression.
“Take it slow, but keep moving forward” is Nancy’s advice when it comes to the recovery process.
The Results: Volunteering and Raising Donor Awareness
Almost two years after her transplant, Nancy has made great strides forward.
“I’m healthier than I’ve been since high school,” she says.
Nancy volunteers at Upstate New York Transplant Services (UNYTS), speaking at area high schools and colleges about her experience and raising organ donor awareness. She plans creatively themed birthday parties for her 11-year-old daughter, who was born close to Halloween.
She has taken up cooking and baking — activities she never enjoyed before — and even started a blog chronicling her favorite recipes. She also keeps up with the blog she started while waiting for her transplant.
“It’s amazing how many people contact me through the blog,” Nancy says. “People from all over the world [who need transplants] or want information for family members. They usually e-mail me and aren’t expecting a response.”
But Nancy does respond to each and every email. “Every time I talk to [a person who has been touched by transplantation], I feel so happy to be giving back after everything I was given.”
Nancy does not know much about her donor, except that she was 34 years old, the same age as Nancy at the time of her transplant, and that “she was a hero [who] saved my life.”
Nancy’s treatment and results may not be representative of all similar cases.
Learn More About Lung Transplant and Cystic Fibrosis
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