SEQUIM — It was during a winter walk up to the artillery battery bunkers at Fort Worden State Park that Ginnie Kitzmiller noticed something was wrong with her cousin, Melissa Smith.
The Sequim residents often enjoyed jogging and aerobics together, but Kitzmiller said something was off that January day.
“We’re very active,” Kitzmiller said, “(but) we had to stop because she was breathless.”
The wheezing and shortness of breath the then 38-year-old Smith felt wasn’t adult onset asthma or the allergies that physicians initially thought, but rather two autoimmune diseases.
Both threatened her life in different ways.
“It just continued to get worse,” Kitzmiller said. “She was quickly unable to do simple things.”
Four and a half years later, Smith was the recipient of an extremely rare multiple-organ transplant, receiving two new lungs and a liver during a 15-hour surgery in Seattle on Oct. 5.
Kitzmiller said doctors informed the family it’s only the 76th such operation performed in the nation and first since 2016.
Smith, a single mother of two school-aged children who has worked in various roles for the Jamestown S’Klallam Tribe for the past 15 years, is expected to make a full recovery, Kitzmiller said last week.
“She’s just been doing outstanding,” Kitzmiller said. “She’s been getting up and walking (recently).”
Family members have created a GoFundMe Page at gofundme.com/f/TeamMissyTransplantWarriors to help with numerous expenses, from household bills, to transportation to and from for her immediate family and caregivers, to food and necessities while living for the next several weeks in what’s called a Transplant House in Seattle.
Smith also created a blog (missyswarriors.com) up through the day of her surgery, and she has plans to update it.
Part of the fundraising, Kitzmiller said, is to prepare Smith’s house for her return. The home needs to be an extremely clean environment, her cousin said, because Smith is on immunosuppressant drugs following her surgery.
While battling the autoimmune diseases — systemic sclerosis-related pulmonary fibrosis, a connective tissue disease that attacked her lungs, and hepatopulmonary syndrome, a rare lung complication of liver disease — in a time of COVID-19 seems overly daunting, Kitzmiller preferred to see the silver lining.
“If anything, it might be a blessing in disguise that things are so stringent and people are more careful than ever before,” she said. “2020 has been a roller coaster (but) if she’d been sick with a basic cold or flu, she could have been taken out.”
About four years ago, after fruitlessly trying inhalers for what doctors surmised was asthma, Smith, on advice of a local doctor, got a computerized tomography (CT) scan that revealed scarring on her lungs.
Essentially, scar tissue had built up in her lungs and surrounded her liver, putting strain on the blood vessels from her liver to her lungs. It was causing Smith to suffocate slowly. She to be put on 24-hour oxygen at high levels.
The diagnosis for pulmonary fibrosis, Smith’s lung problem, her cousin noted, was idiopathic — meaning, a disease or condition that arises spontaneously or for an unknown cause.
While the disease can be environmental, Kitzmiller said Smith didn’t have any habit such as smoking nor had any work situation, such as a chemical plant, that led her physicians to surmise her settings were a cause.
The disease also can be genetic, but Kitzmiller said their family doesn’t have a history of the disease.
“Very frustrating, and each moment with a disease like this is precious,” she said.
In early 2019, following a surgery to have her gallbladder removed, Smith found she had similar scar tissue on her liver.
By January 2020, Smith was more dependent on oxygen. Her body began retaining water, putting pressure on her lungs.
The following month, physicians at the University of Washington diagnosed the second autoimmune disease: hepatopulmonary syndrome, a condition that made it hard for Smith’s red blood cells to properly absorb oxygen.
Already a candidate for a lung transplant, Smith found she needed to have a liver transplant, too, Kitzmiller said; otherwise, any “gifted” organ would be killed by the remaining damaged organ.
To be considered for the transplant, Kitzmiller noted, Smith had to be sick enough to be eligible but healthy enough for the surgery.
“It’s a real balancing act,” the cousin said.
Smith, who had two brief hospitalizations but was otherwise healthy for much of the year, wasn’t placed on the transplant list until September, Kitzmiller said.
Within three weeks, on Oct. 4, she got the call, and she had the multiple-organ transplant the following day.
The cousins had plenty of tough but critical discussions prior to the surgery, as they considered all outcomes.
“We have a really solid faith; Missy and I spent a lot of time praying,” Kitzmiller said.
She said Smith had a team of support behind her, particularly her sister Rochelle, mother Gloria and brother Randy, as family and friends have gathered to help handle expenses, communication and looking after Smith’s two teen children: daughter Eli, 18, and son Alden, 15.
Team Missy even has its own apparel line that the family sells as a fundraiser, identifiable with its deep Sequim purple.
Michael Dashiell is the editor of the Sequim Gazette of the Olympic Peninsula News Group, which also is composed of other Sound Publishing newspapers Peninsula Daily News and Forks Forum. Reach him at [email protected].