Julie Swanson got the call on Saturday morning in late January.
The next day, Jan. 25, she received a double-lung transplant after what her mother, Peggy Paul, described as “18 long months” on the waiting list.
Swanson, of Olathe, Kansas, well-known in the Alpha-1 community for her activism and support group leadership over more than 20 years, is healing at Barnes Jewish Hospital in St. Louis.
Paul said the lungs fit perfectly. “We are so happy that she finally got her call, but sad for the family of her donor,” she said.
Swanson is back on the road to recovery after having a second surgery Jan. 30 to repair a leak. She was also experiencing some atrial fibrillation, in which heart rhythm suddenly spikes and then returns to normal. Her doctors say many transplant patients suffer this temporarily, and it can be treated if it continues.
Swanson was diagnosed in 1988 at age 31. She “was more fortunate than many Alphas, in that her doctor sent her to a pulmonologist after she had several bouts of bronchitis,” Paul said. Swanson’s maternal grandparents died at ages 64 and 70 of emphysema.
She was already familiar with lung disease: the youngest of her two sons, Jacob, had been diagnosed with cystic fibrosis at just 6 months old, in 1986. But she had never heard of Alpha-1.
Swanson researched what little information was available and discovered that there was a support group in Iowa City. After driving there to attend a meeting, she returned home and wrote letters to all the pulmonologists in the Kansas City area, asking for names and addresses of Alpha-1 patients. She then sent letters to each of the Alphas, inviting them to a meeting.
Six attended on April 13, 1991, and listened as pulmonologist James Bradley, MD, described the basics of genetics, phenotype variants and treatments, including Prolastin, which had recently been developed.
Swanson has led the Alpha-1 Midwest Support Group — one of the earliest that’s still active — for part of its 23 years; her longtime friend Dick Bueker led the group for 15 years, and during that time, she was its treasurer. In 2012, when Bueker stepped down so he and his wife could spend more time visiting family, Swanson again took over the leadership. She served on the board of the Alpha-1 Association, which merged into the Alpha-1 Foundation in 2014, and was Association president for two terms.
Swanson was among 16 people honored in 2011 for being at the very first Alpha-1 National Education Conference in Minneapolis, MN, 20 years earlier. She was at the 2014 conference in Kansas City.
Of that first conference, Swanson says, “I was so excited to meet a large number of other Alphas. You had such camaraderie and it was amazing. I had finally found people who understood what I was going through. They were so encouraging and great about sharing education.”
“Julie was able to devote so much time to her Alpha duties due to the loving support of her husband Brad and sons, Travis and Jacob,” Paul said.
Swanson was among the Alpha-1 patients who went through a tough time in the late 1990s, when there was a critical shortage of the augmentation therapy product. “It was scary because that was the only source of therapy for us,” she said. “People who were newly diagnosed couldn’t get it and we also went through spells where people who were already on the product couldn’t get it.”
The Foundation played a major roll in dealing with that shortage and in helping to bring other products onto the market. “It made a difference when other providers came on scene,” she said. “It not only increased availability, but also gave you other choices for treatment, if your insurance would cover one product but not another.”
Swanson’s son Jacob is now 29, and his older brother Travis has two children, Siena, 4, and Tristan, who celebrates his first birthday on Feb. 23. “She’s looking forward to the many ‘adventures’ Siena has lined up to take her Grandma Julie on when she recovers,” Paul said.
“Julie has asked for, and received, prayers for her, her doctors, and her donor family from family, friends, and strangers from one side of the country to the other,” Paul said. “She feels truly blessed to have this chance to see her sons and grandchildren grow up and to live a long life with Brad.”
Swanson says she applauds all the Alpha-1 research now in progress.
“It makes me hopeful one day we will have a cure, and we won’t have to worry about our kids and grandkids having the breathing problems that we do,” she said.