A Mitchell man and his daughter are learning to slow down after a series of setbacks following his double lung transplant more than four months ago.
"My dad wasn't a sit-around kind of guy - he was go-go-going," said Nikki Riggs, sitting by her father Johnnie Propst's bed in the University of Minnesota Medical Center intensive care center earlier this week.
Propst, 65, received his new lungs Jan. 17, after struggling with silicosis for approximately a decade.
According to the American Lung Association, "Silicosis is a lung disease caused by breathing in tiny bits of silica, a mineral that is part of sand, rock, and mineral ores such as quartz. It mostly affects workers exposed to silica dust in occupations such as mining, glass manufacturing, and foundry work."
That exposure to silica particles causes lung scarring over time, making it difficult to breathe.
Propst worked at Fisher Sand and Gravel near Spencer for 14 years before retiring due to his health in 2004.
"It's one of those things that, you knew it could happen, but you didn't ever believe it would happen to you," and it wasn't discussed with laborers at the quarry too much, Propst said, adding that he regularly wore a mask at work. "You worked in the dust, but it didn't bother you."
Because of his condition and subsequent complications, Propst has a tracheostomy that prevents air from getting to his vocal cords. At least for now, he is unable to speak, and instead slowly and deliberately mouths words to Riggs, who has been by his side all but 15 days since the transplant and writes down or "signs" any words she misses.
Though Propst said he feels guilty that his only child has been away from her husband and three teenage children so long, she is his biggest support and motivation to keep fighting on the hardest days. And leaving isn't an option, according to Riggs.
"He's the kind of grandpa who's there for the singing contests, the games, everything. That's the kind of guy he is, and grandparents are an important part of kids' lives," she said. "If we have to be here for a few months so he can be there for a few years, it'll be worth it. My kids need him in their lives."
An unexpected diagnosis
Propst's silicosis was undiagnosed until 2009, when he went to the hospital with symptoms similar to those of a heart attack.
"I saw him in the morning, and he took the kids down to the park, and all of a sudden, he was struggling breathing," Riggs said. "He ended up having a collapsed lung."
Propst was diagnosed with silicosis after the first lung collapse, and he suffered two more by the time two years had lapsed.
Propst routinely saw his primary care physician in Mitchell and his pulmonologist in Sioux Falls. Five or six years ago, he was referred to the Mayo Clinic, where he was told he would need a lung transplant but advised to "hold off as long as he could," Riggs said, "because 'new' lungs only last 10 years once they're put in."
Riggs' strong, independent father continued to self-treat his condition with nebulizers, inhalers and oxygen support as the disease progressed. Early last year, with just 21 percent function left in his lungs, Propst's pulmonologist called the Mayo Clinic, suggesting the time had come for the transplant. But Riggs found out her dad had been too strong for too long.
"They told him that he was too far gone, and they would not be able to do his surgery," Riggs said. A list of hospitals with wider criteria, where the transplant might be possible, was then provided.
Riggs accompanied Propst to the University of Minnesota Medical Center in April 2018. He spent a week doing testing there, before returning to Mitchell for additional evaluation. On Dec. 26, he was approved and placed on the transplant list. At 11:30 a.m. on Jan. 17, Riggs got the bittersweet call she hoped would change her dad's life: someone had died, and their lungs were enroute to Minneapolis.
"They said we had enough time to drive there," Riggs said, so she and her father quickly packed their bags, bid their family farewell and made the trip to the cities. Once they arrived, Propst was taken straight to the pre-op room.
"It was a long, exhausting day," recalled Riggs, who had awoken for work at 5 a.m. that day. "I think I got to sleep maybe 20 minutes. ... At that point, I wasn't worried that anything would go wrong. I just had faith that everything would be okay."
The surgery was predicted to take six hours, but instead it took 10.5, because of a procedure Propst had done to prevent his lungs from continuing to collapse.
"They'd sealed his lung to the chest wall, and scar tissue had formed, so they had to peel the lung from the chest cavity and remove the scar tissues," Riggs said.
A series of setbacks
If everything went well, doctors predicted Propst would spend two weeks in ICU before being released into the Minneapolis community to recover for three months. But shortly after surgery, a series of complications began. Propst's breathing tube was removed for a couple of days, but he struggled to breathe, despite the new set of lungs. Having breathed only with the top half of his lungs for so long, Propst's diaphragm had "forgotten" how to do its job, and he was unable to circulate enough air. A tracheostomy was placed through the front of his neck to allow him more physical freedom while he continues to heal.
"Your diaphragm is a muscle, and it takes a while," Riggs said. "They think that, with time and practice breathing, that his diaphragm will get back to working. But with all of his setbacks, every time he has a setback, his breathing takes a setback, too."
Mid-February, Propst was transferred from the hospital to a long-term care facility that specializes in patients who need extra time to get off a tracheostomy. The day he was released, the incision on his chest opened. A few days after he arrived there, they learned that the sutures attaching the right lung to his bronchial tubes also had come apart, so he was re-admitted to the hospital, where he underwent another surgery to re-stitch the connection and wrap a flap of muscle from inside his chest cavity around the right lung to keep it viable. Doctors had decided to wait on fixing the chest wound, but it became infected, and his ammonia level rose to a dangerous level.
"That isn't really something they normally see in lung transplant patients of his age," Riggs said. "By the time they figured out what it was, he was nonresponsive and doing pretty bad. They didn't know if was going to make it at that point."
Following a series of infections treated with antibiotics, Propst's kidneys began to fail. He was put on continuous slow dialysis in order to maintain his blood pressure, and he had to stay in bed. Shortly after he transitioned to three-day-a-week dialysis, he began to have trouble breathing, and doctors found that scar tissue had closed off his left lung, so they put a stent in to open it up.
A few weeks ago, doctors covered his chest wound with a layer of fat. Last week, they added a skin graft to that area. They anticipate a second skin graft will be necessary for the site to fully heal. Also last week, they scoped his bladder to examine a mass from within his bladder that turned out to be a blood clot. And over the last four months, Riggs said her father has "had more chest tubes than I can count - at least 10 to 15 - to 'tap' his lungs" in order to release fluid. He eats via a feeding tube inserted directly into his intestines, and a second tube routes medications directly into his stomach.
Though doctors, nurses and various therapists visit him at all hours of the day and night, often it is Riggs who first notices when Propst begins to backslide.
"When you know something's wrong before the tests show something's wrong and the doctors can't figure out what it is, but you can see him deteriorating ... that's the hardest," she said. "When I can see it but other people can't see it yet, that's the worst."
The man who was known to be working at least as long as the sun shone each day now struggles with strength. When he was doing well, he could walk a few hundred feet around the ICU with a portable respirator. For the past couple of months, however, he has been too weak and has been bed-ridden.
Still, Riggs is optimistic.
"It's normal to have bumps along the way. They say lung transplants are one of the harder transplants, but to have this many complications along the way isn't something that they expect," she said.
It's an attitude she said she learned from Propst.
"Dad always says, 'If it's meant to be, it will be. If it's not, then it won't,'" she said. "We've always had that belief (and trust) in God."
A busy recovery
The days at the University of Minnesota Medical Center's ICU pass quickly for the father and daughter. The transplant, ICU, kidney and thoracic teams visit Propst daily, and he undergoes physical, occupational, speech and respiratory therapy. Infectious disease doctors keep an eye on his antibiotics to ensure they won't counteract his anti-rejection drugs.
"There are a lot of people coming in and out throughout the day," Riggs said.
Plus, in the true "go-go-go" fashion that Riggs is used to seeing with her dad, Propst does his own therapies when they are alone.
"If he's awake and there's no one here, he's usually doing some kind of exercise," she said. "He tries to keep moving ... his arms and legs, but he's been pretty weak lately."
But he is working hard to regain strength so he can get back home to his best friend, a teacup chihuahua named Bugs, and to take his grandchildren fishing again. While they're away at the hospital, Propst and Riggs know their responsibilities are taken care of at home.
"Anthony is a great partner," Riggs said of her husband. "He takes care of stuff without ever questioning it. ... I can't even come close to expressing how thankful I am for God putting him in my life and how much he supports me."
Propst's sister, June Jares, came to stay with him a couple of times, in order for Riggs to return to her family and be a part of events such as prom and graduation this spring. And Riggs' mom, Dee Nesheim, who once was married to Propst, has been a "rock" for them both, too.
"When my dad had that spell when his ammonia level got high and we didn't know whether he was going to make it through, it was hard for Anthony to get up here, because the kids had stuff going on and he was farming," so Nesheim came, Riggs said. "I didn't want (the kids) missing school that much, and I wanted a parent to be with them, so my mom came up and spent the week with me, kept me company and came and visited dad a couple of times and just provided that support and gave dad somebody else to talk to."
Riggs said friends back in Ethan have helped the family "keep on trucking" along the way, too. In April, a benefit was held to help her continue to take time off from LifeQuest to be with her dad.
"I'm humbled to have people help like that who don't know me well," Propst said. "It definitely makes you appreciate where you live and the community you're involved in. It's hard to describe in words how it makes me feel."