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 noticed 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 later wasn’t adult asthma or allergies that physicians initially thought, but rather two different autoimmune diseases that threatened her life.
“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.
Smith, a single mother of two school-aged children who has worked in various roles for the Jamestown Tribe for the past 15 years, is recovering now in Seattle and is expected to make a full recovery, Kitzmiller said last week.
“She’s just been doing outstanding,” said Kitzmiller. “She’s been getting up and walking (recently).”
Smith said, through messages to her cousin, she’s been “humbled and honored … with how supported and loved I feel.
“A huge shout out to the hero’s here at University of Washington,” Smith added.
Family members have created a GoFundMe Page at www.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.
“Missy has such a big heart and a positive outlook — it has been hard to not be able to pick up the phone and talk with her,” Smith’s sister Rochelle said.
“I honestly feel like a piece of me is missing not having my mom and my sister here. I can’t wait to take her kayaking when she gets back.”
Smith also created a blog (www.missyswarriors.com) up through the day of her surgery and with 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 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 fact 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 and need 24-hour oxygen at high levels.
The diagnosis for pulmonary fibrosis, Smith’s lung problem, her cousin noted, was initially deemed idiopathic — meaning, a disease or condition that arises spontaneously or for an unknown cause. Now found to be systemic sclerosis, there is still no known cause, Kitzmiller said.
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 can be genetic, too, 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 and 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 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 eligible 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 had two brief hospitalizations but was otherwise healthy for much of the year, but wasn’t actually placed on the transplant list until September, Kitzmiller said. Within three weeks, on Oct. 4, she got the call, and the following day had the multiple organ transplant.
Smith wrote about getting the notice she’d be having her surgery on her blog: “Such a strange feeling to drive away from my home and most of my family knowing how uncertain my future truly is right now. Even if things go smoothly with zero hiccups, I won’t see them for about four months! So, leaving was hard. But necessary so I can do what needs to be done in order to live a semi normal life with them. It eases so much heartache knowing they will be surrounded by people I love and who love us too! I know I am leaving my most precious things in the world with some amazingly capable and loving people.”
Kitzmiller said doctors informed the family it’s only the 76th such operation performed in the nation and first since 2016.
The pair of 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 various expenses, communication and looking after Smith’s two teen children: daughter Eli, 18, and son Alden, 15.
“It’s been hard; COVID has made it difficult because we can’t see our mom as easily,” Alden said. “The exciting part is that this will all pay off and I’ll get my mom back; and she’ll be healthy again.”
Eli said she is looking forward to going with her mother to their favorite spot on the Dungeness River without having to carry oxygen — one of Smith’s self-described “bucket list” items — and that she can’t wait to have her mom back and be able to see her do all the things she loves to do.
Kitzmiller noted, “We have what we call our team,” she said … literally: Team Missy even has its own apparel line that the family sells as a fundraiser, identifiable in its deep Sequim purple.
Smith will be at the Transplant House for about three months doing physical and occupational therapy to strengthen all of her muscles before eventually returning to Sequim, and will need check-ups now and then. Kitzmiller said Smith is on dialysis to help her kidneys improve after the shock of surgery, but that she’s doing well.
“As far as I know it’s a full recovery,” Kitzmiller said.