Many of the 50 years Chrystal Moldenhauer has been alive have been difficult, but with help from advances in medicine and the support of her family and her Sanford Health providers, the numbers are adding up in her favor.
The cystic fibrosis that controlled her life – and at times threatened it – has nowhere near the grip on her that it once did.
Those daily treatments that could take up to eight hours of her day are gone. The long and frequent hospital stays and the countless quality-of-life inconveniences that affect every waking minute have been replaced.
By what, exactly? By much more effective medication and a less invasive treatment plan. By the four acres where she lives with Lucas, her husband of 25 years and their 11-year-old daughter Hadassah. By the family’s 18 sheep, four cats, three dogs and 55 chickens.
Chrystal spent much of her life surviving with cystic fibrosis by closely following the treatment plans prescribed for her, coupled with her own faith and resilience. Now, with those qualities still a huge part of her life, she is thriving. Her care is better. Life is better.
“I’ve found real lasting partnerships with the care team here in Sioux Falls at Sanford,” Chrystal said. “These are people who really know their stuff, but they also know that I know my body. So they’re very respectful and open to my ideas and my input.”
A lifetime of wrestling with this disease within several different health systems in Wisconsin and Minnesota has given her a unique perspective on her care and health care in general. At times she has heard she should accept her heath decline as an inevitable part of living with CF. She no longer hears that.
“The most recent virus I was fighting, my doctor told me we’d done one round of antibiotics and I was not back to my baseline yet,” Moldenhauer said. “He told me, ‘I don’t think we should stop, Chrystal. You should not accept anything less than your baseline.’”
Not accepting limits had always been part of Chrystal’s personal brand. Seeing that same attitude in her providers was comforting.
“I was like, ‘Wow, that’s awesome.’ That’s why we’re here at Sanford. It might sound aggressive but I love it,” she said. “That’s what I needed to hear.”
What is cystic fibrosis?
CF is a disease of the exocrine glands – the glands that make mucus and sweat – that leads to thicker secretions in the body, primarily affecting the digestive system, lungs, and sinuses. Chrystal’s primary struggle has been with lung infections.
She was diagnosed at three months old after her mother noticed her skin was unusually tacky compared to her older brother’s. At the time of that diagnosis, CF was largely considered a childhood illness. This was not because children outgrow it. It was because those who have it usually die before they reach adulthood.
Treatments have evolved, however. Highlights included development of the vest machine, which mechanically helps clear lung secretions, and steady advances in the medicine used to treat the disease.
The Cystic Fibrosis Foundation estimates almost 40,000 people in the U.S. have CF, and more than half of them are adults.
Because it’s a relatively rare disease, a personal commitment to participating in drug trials can be an important piece of developing new medicines. To that end, Chrystal, who also has CF-related diabetes, has participated in several trials over the years, most notably for the drug Kalydeco in 2008. The third iteration of the drug, which she began taking in 2019, led directly – and almost immediately – to the quality of life she now enjoys.
“When I took it the first time, within an hour or two, it was like reverse drowning, in a way,” she said. “Stuff was coming out without any effort on my part, which is saying a lot because I was struggling to clear secretions before using that medicine and this just thinned everything out. It was coming out for hours for about a day and a half. And then it was all out. There was nothing left in there.”
Her husband Lucas was witness to what Chrystal refers to as “struggling.” Most would use stronger words in describing how she coped.
“When she says ‘struggling,’ what she means is she would cough so hard that sometimes she would crack a rib,” Lucas said. “It was a workout for her to cough. You know how coughing goes – sometimes you get into coughing fits, and then you lose control and none of that is fun. It’s all painful and it is very physically strenuous. So when she says she was struggling, just imagine your worst double-lung pneumonia. None of it is fun.”
Chrystal would wake up at 4 a.m. and spend two hours clearing out her lungs before daughter Hadassah woke and got ready for school. While Hadassah was gone, Chrystal returned to doing therapy that would allow her to be the kind of parent she wanted to be when her daughter returned home.
At night after three hours or so, her lungs would start filling up again, her breathing would get more difficult, and Lucas would take over much of the parenting. Chrystal would do therapy, go to bed, and repeat the routine the next day.
“It was my full-time job,” she said.
A new life
The changes since then can be measured hour by hour. She still gets up before her daughter but she does her therapy for a half hour, not two hours. She is good then for the rest of the day. She homeschools her daughter, is fully engaged in all her daughter’s extracurricular activities and does chores around the farm. Plus she has two part-time jobs.
“Basically, I can do whatever I want,” she said.
Not long after it became clear her new medicine was going to make a big difference, Chrystal and Lucas were walking through Falls Park when a red-winged blackbird began dive-bombing Lucas. He was wearing a red hat and surmised this was adding to the bird’s agitation.
Chrystal grabbed Lucas’ phone and began taking a video. The bird kept swooping down repeatedly toward her husband’s head.
Chrystal had discovered early in life that CF is not a disease people can see, but it is one people can hear. You can hear the heavy breathing, the shortness of breath, and the coughing.
What Lucas heard at Falls Park was the absence of CF’s symptoms. Normally when Chrystal was witness to something really funny, she stifled her laugh because no good was going to come out of what it might do to her lungs.
“We watched the video over and over and she was really laughing,” Lucas said. “She couldn’t do that for decades because before she began these meds, she would have had a coughing fit. It’s hard to think through all the different ways her quality of life has changed. Now we have the right doctors, the right philosophy and the right meds. All those issues affecting quality of life have come together so that she can laugh.”
A loyal care team
Chrystal’s Sanford care team includes Nancy Foss, a nurse practitioner who has worked with adult cystic fibrosis patients since the 1990s. It also includes dedicated pharmacist Stacy Peters, who has been working in a clinical setting with pediatric and adult cystic fibrosis patients since 2004.
Both credit Chrystal’s resolve to be a good patient as a key to living with CF.
“Cystic fibrosis is a lifetime of having to diligently perform treatments, monitoring your symptoms and being so careful about infection,” Foss said. “It’s diagnosed in childhood, so by the time I see them as adults, they’ve been doing this routine for years. Some are more diligent than others, but Chrystal has always stuck with her treatment routine.”
The Cystic Fibrosis Foundation reports that in 2022, the median age at death for people with CF was 66 years, and their life expectancy was only 12% lower than that of healthy people. When Chrystal was born, the life expectancy for someone with cystic fibrosis was 19.7 years for women and 26.6 for men, according to the Cystic Fibrosis Foundation.
Improved survival rates for people with CF are due to better lung function and fewer lung exacerbations. New medications that interact with the CFTR gene have also been developed.
In a sense, Chrystal has been on the front lines through much of this progress.
“She is a modern CF story in that she shouldn’t be alive at this point based on statistics,” Peters said. “I credit the advance in medications for that but also because she is somebody who has always taken such good care of herself. She has always done above and beyond what we’ve asked of her.”
The road to Sanford Health
Chrystal lived a relatively normal childhood but contracted a bacterium at age 15 that made her more resistant to antibiotics. This led to more prominent CF symptoms. Three-week quarterly visits to the hospital became part of her life.
She was the valedictorian of her high school class and also homecoming queen, so it’s safe to say the obstacles CF threw her way did not stop her from achieving goals or making friends. That has been true throughout a medical journey that has included CF health care in Wisconsin, Minnesota and now South Dakota.
Sanford became a treatment hub for Chrystal when she and Lucas sought a medically conducive solution that would not include the time-consuming traffic they were always battling in the Twin Cities. She asked her doctors about her options. They recommended Sanford in Sioux Falls.
“I heard that and I asked, ‘Where is Sioux Falls?’” Chrystal said, laughing. “I’d never been there but I can tell you now I tried it and I love it.”
Initially, the Moldenhauers continued to live in Minnesota with Chrystal making a two-and-a-half-hour drive from New Ulm to Sioux Falls. In time, they took that drive out of their lives as well.
Addition to the family
At age 39, she got pregnant with Hadassah. CF can add complexity to a pregnancy but it is not uncommon for those with CF to have a normal childbirth experience. Independent of becoming a mother, however, Chrystal’s condition began to deteriorate when the medicine she was depending on at the time began to fail her.
The family moved to Sioux Falls in 2016 to make Chrystal’s access to Sanford treatment easier on the family. The move eliminated the financial burden of hotel stays and brought her closer to her CF care team.
Hadassah is now 11. She carries the CF gene and occasionally demonstrates mild versions of the disease’s symptoms, particularly when she is suffering from a cold or the flu. She is fully engaged in a full lineup of extracurricular activities, however, which Chrystal can now follow with more energy than would have been the case before.
“When I was younger I would always tell my friends, ‘Hey, my mom has this weird disease,’” Hadassah said. “It was almost like I’m bragging. But they pretty much all know that my mom isn’t normal like them. So every once in a while, I will have to tell them she can’t be here right now because she’s doing therapy. And they’re like, what is that? So I have to update them. It will be like, ‘Well if I haven’t told you already, my mom has a sickness and she needs to do therapies at certain times of the day and this is that time.’ So that can be hard sometimes.”
How things are better now
The Moldenhauers credit their faith for providing the strength to take on the obstacles of Chrystal’s disease. They thank God for giving them the wisdom to make the Sioux Falls area their home and Sanford Health their choice for care. The chickens, sheep, dogs and cats that they make a part of their days all play a role in this, as does an angry red-winged blackbird.
The point is, Chrystal can make room for them now.
“I still see the pulmonary care team here at Sanford – that’s probably every six months instead of quarterly,” Chrystal said. “Once a year I’ll see a doctor for the diabetes. I actually have, for the first time in my life, a normal family practice doctor. I’ve always just seen my CF doctor so often that I never bothered getting a normal doctor. So I’ll do a yearly checkup with her.”
Romans 8:28 tells us, “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” It is one of Chrystal’s favorite passages and it does a good job of explaining how the Moldenhauers live their lives.
“We’ve had this faith where it’s going to work out,” Lucas said. “Even if the care we were receiving at the time wasn’t what we wanted or what we expected or what we demanded, we’d figure it out.”
The pursuit of health care that suited them has had detours, but the Moldenhauers figured it out.
“We are where we wanted to be, where we needed to be,” Lucas said. “Even though sometimes we didn’t know we wanted to be here, we found a home and we love the Sioux Falls. We love Sanford. It’s just all come together.”
Learn more
- Woman fights against cystic fibrosis with voice, passion
- Girl gets life-changing cystic fibrosis treatment at Sanford
- Clinic sees cystic fibrosis patients’ lives lengthen
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Posted In Children's, Pulmonology, Sioux Falls, Specialty Care