Episode Transcript
Chrystal Moldenhauer:
I was doing probably eight hours of therapy a day. I would wake up at four and spend two hours clearing out my lungs before my daughter woke up to get ready to go to school. Because I wanted to be able to interact with her without feeling short of breath and crabby from that.
And then she’d go to school, and I’d go home and I would do therapy for as long as I could physically do it. And then normally we’d, you know, get her to bed at whatever time. So I’d have three or four hours with her when I could breathe well. But normally after about three hours, my lungs started to fill up again and I couldn’t breathe. My last hospital stay, I told my friend, I think this is going to kill me.
Matt Holsen (announcer):
This is “Family Portraits,” a podcast series by Sanford Health. And now, Alan Helgeson with Sanford Health News.
Alan Helgeson (host):
If you think about your childhood and that fun, carefree spirit with which you bounce through the days, it probably brings up a smile and maybe a glow to your face as you quickly pull up a mental image from that time. What if that memory was filled with question marks, unknowns, and dark clouds that even medical experts at that time could only shrug their shoulders on what might lie ahead.
The dizzying rate at which medical advances happen these days probably doesn’t even make you have a second thought about what’s possible. But in 1974, it wasn’t quite the same. No iPhone clouds. Clouds were something we looked up at. And medical breakthroughs, oh well they still happened. We first learned about the Heimlich maneuver. The patent was granted for the MRI machine and the first Tommy John surgery was done.
We didn’t hear about these things on TikTok though, or Snapchat still for other areas of medicine in 1974. It was very much a frightening world, especially if you were born then with a genetic disease.
Chrystal Moldenhauer (guest):
I was diagnosed with cystic fibrosis at the age of three months when my mother noticed some irregularities between my body and my older brother’s body. Something about my skin was tacky and she thought that was not right.
Alan Helgeson:
That’s Chrystal Moldenhauer. Now if you don’t know about CF or cystic fibrosis, the outlook then was not very good.
Chrystal Moldenhauer:
I believe they were told I may not make it a year. One year. It was very much a childhood illness. Kids did not live past their elementary years for sure.
Alan Helgeson:
Before we go much further, we jump right into what you might be told in 1974, but now let’s talk about what CF is.
Chrystal Moldenhauer:
Cystic fibrosis is a disease of the exocrine glands. So any gland that excretes anything is affected. I believe it makes secretions dehydrated, so much thicker throughout the body and it causes the most problems in the GI, the digestive tract, and then in the lungs and sinuses. So typically you’ll see people with cystic fibrosis maybe look a little malnourished and they cough a lot.
Alan Helgeson:
As you’re probably putting together, not a lot of options for treatments.
Chrystal Moldenhauer:
They did the pancreatic enzymes for digestion and they did percussing with the hands to try and loosen secretions in the lungs. And I think that that’s all I know of. That’s all they did for me. I’m sure they had antibiotics and such, but I wasn’t that sick yet. Back then I was considered to have a mild case at that point. I didn’t struggle with it until probably I was, I think 15 maybe was my first hospitalization. So I made it quite a while, being pretty healthy.
Alan Helgeson:
Okay, so as you have followed along the last few minutes, Chrystal seemed to have things a little bit better than what they maybe could have been given her condition. So how did we get here today? Well, that is the strange path of a genetic disease. They take you to places you don’t expect, kind of like Chrystal’s journey. And growing up in her family,
Chrystal Moldenhauer:
They treated me like a normal kid for the most part. I had to take digestive enzymes when we had meals. But other than that I didn’t have a whole lot of special allowances made for me.
So I was expected to do the chores and to contribute to the family. And I had a paper route in seventh and eighth grade and I was expected to ride my bike. You know, it felt like tough love, but it was good for me in the long run.
When I got sick at age 15, then I started to be hospitalized probably quarterly for three weeks at a time. And then there were obviously some changes that were made. You know, I was allowed to have special exceptions for homework, due dates and stuff in high school.
Alan Helgeson:
Chrystal is 15 now. This would be around 1989 and things would start changing.
Chrystal Moldenhauer:
Yep. I contracted Pseudomonas aeruginosa, most likely from a CF camp where we were all together, you know, enjoying each other’s company but not realizing we were sharing bacteria. It’s a bacteria that once it’s in our lungs, it never goes away and it becomes a superbug. It becomes resistant to antibiotics, which is what happened to me.
So by the time I turned 18, they had been so aggressive in treating me that they had run out of antibiotic options and told me we can’t do anything else for you because that particular CF center didn’t know about some of the different airway clearance options that were available.
Alan Helgeson:
When you think about a bug, a bacteria that never goes away, what does that mean to someone like Chrystal that has cystic fibrosis?
Chrystal Moldenhauer:
It always is active. I always have a low grade lung infection, so I always do therapy twice a day to keep my lungs cleared up. Anytime I get a cold virus, it kicks usually down into my lungs and flares up the Pseudomonas bacteria.
Alan Helgeson:
While talking with Chrystal and her family at this point, she made eye contact with her daughter and they smiled at each other. So I had to ask them what was going on. It happened to be about the cold virus and how it affects life at their house.
Chrystal Moldenhauer:
Well, we chose to homeschool because the virus activity in grade school was manageable, but then when COVID hit, it became a real hardship. Every virus is dangerous for me, but COVID was especially. So we pulled her out and started homeschooling, which we’re enjoying. But we still allow her to do extracurriculars with her friends.
And so when she brings home a virus, we try very hard to not share it. (Laugh) Sharing is good, but not that.
Lucas Moldenhauer:
So when family, brothers and sisters from my side or her side want to come visit, we always have to be very careful. Have they’ve been exposed to any viruses, you know, for a week or so before coming to visit us? Because we just can’t run that risk of Chrystal getting sick again if it can possibly be avoidable.
Alan Helgeson:
That’s Lucas, Chrystal’s husband.
Lucas Moldenhauer:
Because cold and flu season is right around the corner and that’s when all the best holidays start. And right? Thanksgiving, Christmas, Easter, all smack dab in the middle of cold and flu. And so it’s definitely a challenge because I have five sisters and she has a number of siblings. And what are the odds that everyone’s going to be healthy?
Alan Helgeson:
For Hadassah, Chrystal and Lucas’s daughter, it’s hard for friends to understand those extra steps needed for things we often take for granted. Like the sniffles.
Hadassah Moldenhauer:
Sometimes I just go to school with like a mask on and everybody’s asking me questions and saying, why do you have the mask on? And I’m just like, I want to say because you’re really sick, you’re always just sick. I’m like, probably shouldn’t say that. So I just say, I just want to keep the risks down and my mom has a disease and whenever she gets sick she could possibly go to the hospital. It’s always a possibility. When I was younger, if I ever got sick, she almost was in the hospital.
Alan Helgeson:
And it’s for reasons like this that Chrystal and her family are extra cautious.
Chrystal Moldenhauer:
So CF has become a very isolating disease. You can’t go to support group with other people who have it. The movie “Five Feet Apart” kind of shows that, that we not only keep a physical distance, but the CF Foundation recommends having one person in the building who has cystic fibrosis. So my husband had a work party for Christmas and one of the spouses had CF so I didn’t go because it’s just not worth risking me giving my bacteria to him and vice versa.
So it makes you feel isolated and alone in that part of it. But I think a lot of people overcome that with online connecting. You know, it’s not the same, but it’s something.
Alan Helgeson:
For people with cystic fibrosis like Chrystal, there’s some things that we might not think about that are a pretty big deal.
Chrystal Moldenhauer:
It’s been probably two big things I’ve noticed. When people are struggling with a cold virus, they’ll often say, oh, it’s no big deal. It’s just a little sniffle. And I bite my tongue because I want to say there’s no such thing for me. There is no little sniffle. You know, every virus can be a big deal for someone who has a superbug bacteria in their lungs that they’re struggling to keep under control.
But when it flares up, you don’t know always if the drugs are going to work to keep it at, you know, keep it back down to a manageable level or if it’s going to be the last virus you have.
The other thing I think I’ve noticed in my adulthood is when people make comments about, Hey, are you short of breath? Or why are you breathing like that? Or you know, like they draw attention to it. It doesn’t help (laugh) the situation because I’m already self-conscious about my breathing.
Lucas Moldenhauer:
Because of the medications that came out 15 years ago and then 10 years ago. And then again five years ago, her quality of life has gotten so much better. But like when we got to know each other back in college it was a terminal disease then, and it still is a terminal disease now.
Alan Helgeson:
While talking with Chrystal and sitting with her family at their dining room table, she would have really hard breathing at times. You can probably hear it. I asked her if I could mention that.
Chrystal Moldenhauer:
Yeah. A lot of times, I still remember the times people have commented on my breathing because we were walking up a hill or doing something and I wanted to just tell them, look, I’m really proud that I’m able to walk up this hill. Don’t discourage me.
Alan Helgeson:
So while we’re here today and Chrystal is telling us her story for people with CF, the simple process that we probably don’t think much about having to do is a lot. And I mean a lot of work. For Chrystal, for many people with CF, treatment may have included using a vest.
Chrystal Moldenhauer:
Well I can tell you what I know from my experience. And that is that it is a vest you wear and you hook it up with air hoses to a machine that pumps air out at different frequencies and different pressures. And so, you’re breathing against a vest that’s filled with air. So it’s a workout.
But it shakes your chest at different speeds. The idea being that as you breathe intentionally, deliberately, deeply, and you’re sitting in a chair usually and I have a nebulizer with medicine in it that I’m also inhaling and then makes you cough. It stimulates a cough. And then the coughing is what clears out the infected mucus.
Alan Helgeson:
Now it wasn’t only one time a day, right?
Chrystal Moldenhauer:
Well at that time it was twice a day. But I was not really compliant because I just figured well I’m going to die anyway so who cares. I mean I wasn’t dating Lucas yet, didn’t have obviously a child. So I didn’t have a whole lot that I was trying to live for. So I just kind of blew it off.
Alan Helgeson:
So why would you not do it if you know you needed to?
Chrystal Moldenhauer:
Throughout my life my birthdays have kept up with the life expectancy. So for example, when I turned 21 I thought it was my last birthday because the life expectancy was 22 at that time. So I was messed up most of my birthdays (laugh).
Alan Helgeson:
And the vest is still important today?
Chrystal Moldenhauer:
Yep. Yep. Very basic. But it works. And when I get sick today I will do more vesting and so then I’m coughing out more junk and you try and get the bacteria load down in your lungs by getting the junk out.
Alan Helgeson:
As a kid that really defied the odds with each year, and then here we are now, imagine life as a kid and then the stages of growing up and the grit and determination it takes to get through it all.
Chrystal Moldenhauer:
I was starting at a new school, we had moved to a new town in Wisconsin and I had to wear this weird metal brace thing on my face for orthodontia. So everybody was pretty much distracted by that and not noticing my invisible disease, my breathing problem until we got to basketball practice in the afternoon.
So the most of the day went fine. I would attend class and just looked like a normal kid. And then when it was time for basketball practice, the other nine players would run up and down the court and my coach made me stand in one place because he didn’t like to hear me cough.
And then after that I would go home and I’d have to practice trumpet or something, you know, I picked the instrument that needed the most lung power. That’s OK. It was worth a shot.
And then I think mealtimes was always something I really looked forward to because I had quite the appetite because I didn’t take my enzymes faithfully. So a lot of the food I ate just went right through me and I’d just be really hungry all the time.
Alan Helgeson:
Chrystal, while we were talking I learned that going through everything, she learned to be really quite the fighter. And it applied to pretty much everything in her life, including her school.
Chrystal Moldenhauer:
It was a preparatory school and it was very competitive and I’m competitive (laugh). So I think probably I felt like it was the one thing I do in my life because I thought that was going to be the length of my life was high school, maybe a little bit into college. So I probably studied too hard and missed treatments and set myself up for a cycle of getting sick and then having to get back to school and catch up, which caused me to get sick again. You know, probably was a thing for me, a pattern.
Alan Helgeson:
That didn’t seem to slow her down. She would go on to become the class valedictorian.
Chrystal Moldenhauer:
And I was also a homecoming queen, I would like to say (laugh), which was a long time ago in a galaxy far, far away. But yeah that was – I thought that was all it was going to be for me. So I was going to make it as big as I could in that venue.
Alan Helgeson:
During this time Chrystal had a very difficult home situation and over the course of several years. In the ages of 18 through 25, she would say she was homeless by choice.
Chrystal Moldenhauer:
For that period of my life, CF saved my life in a way. I had very supportive social workers at the CF Center in Wisconsin.
Alan Helgeson:
Her academic achievements would cover her tuition, and aid would take care of room and board during the school year.
Chrystal Moldenhauer:
Holidays were tough being alone in the dorm for Thanksgiving or Christmas or Easter if a friend couldn’t take me in. But then like during the summers, I’d have friends house me two weeks here, two weeks there. Because they all knew my home situation as well. So they wanted to help me stay healthy.
Alan Helgeson:
And almost no contact with parents.
Chrystal Moldenhauer:
Very little. It just wasn’t a healthy – I didn’t get along with my stepmom, so it was a two-way street, and it’s much better now. But yeah, it was, I had to cut off contact just for my own well-being and sanity at that point.
Alan Helgeson:
So eventually school comes to an end, right? Maybe. Well Lucas came into the picture.
Music:
“I’m just driving home thinking of you. I’m wondering if you, me too.”
Chrystal Moldenhauer:
We met when I was 23. I was finishing up year five of a seven-year journey through a four-year degree. I think I visited his family at the beginning of that summer and it was probably early June. And his mom asked, so how long can you stay?
Lucas Moldenhauer:
I have five sisters. So what’s one more girl in the house?
Alan Helgeson:
Chrystal and Lucas. School sweethearts. A college love story that’ll just make your heart sing.
Chrystal Moldenhauer:
I was second alto and he was first tenor.
Alan Helgeson:
Eventually they married, and then things get tricky. Remember CF doesn’t really stop and wait for love.
Chrystal Moldenhauer:
Right after we got married, we moved to Wisconsin so he could be in the seminary near Milwaukee. After the four years of seminary, we requested that the church send us back to Minnesota so that I could go to the University of Minnesota again. And so that happened. Thankfully we lived in the Twin Cities metro for a dozen years until I got tired of the traffic.
And I asked my CF doctor in the Twin Cities for a recommendation for another CF center with the same level of care because the Minnesota center was world known as probably the best one in the world. So they recommended Sanford. And I said, where is that (laugh)? Sioux Falls, where is that? So I’ve never been here but we tried it and that was 2012. And loved it.
Alan Helgeson:
They loved it but they drove quite a bit each time they came to Sioux Falls.
Chrystal Moldenhauer:
So it was a horse apiece, it was an hour and a half-ish to the cities or an hour and a half to Sioux Falls, but the traffic was much easier coming west. So that was a good thing. We didn’t know it at the time, but I was pregnant my first visit to the doctor in Sioux Falls because I had started the new medicine five months before.
Lucas Moldenhauer:
Which new medicine?
Chrystal Moldenhauer:
Kalydeco, there we go. Yep. Kalydeco. Anyway, so I had started that five months before and they had said there’s a chance you can get pregnant. And we both kind of laughed because we’d been married 13 years by that point. And yeah, we were pregnant. Just didn’t know it at that time. We were very new, like six weeks or something.
Alan Helgeson:
A baby!
Lucas Moldenhauer:
Again, the miracles of all the blessings of the new meds that kept coming out in her lifetime to just keep pushing that life expectancy further out, further out, further out. Yeah, so we were coming out here to Sanford, fell in love with the care, fell in love with Sioux Falls as a community. I’ve told this hundreds of times, how just walking down the sidewalk in Sioux Falls, people would wave at us that we didn’t know and they would wave with all five fingers in Minneapolis. We were used to getting waved at was just one finger (laugh). So we fell in love at so many levels.
Alan Helgeson:
We’ve been talking about CF and now Chrystal and Lucas are expecting unfortunately more health issues.
Chrystal Moldenhauer:
For me, I have diabetes as well, CF related diabetes, which acts like Type 1. So I take insulin. So for me that was almost a bigger deal than the cystic fibrosis. But the diabetes part we managed very aggressively and deliberately and Sanford was amazing for that. They stayed in contact and got my numbers every week that I was recording and making sure that the baby wasn’t getting too much of whatever is bad. If you have diabetes and you’re pregnant –
Alan Helgeson:
Not just pregnant.
Chrystal Moldenhauer:
Very much. Yes. High risk pregnancy. Yes.
Alan Helgeson:
Thanks to the expert high risk OB team at Sanford Health, baby Hadassah went nearly full term.
Chrystal Moldenhauer:
At 38. I called and said I can’t breathe now. I need to be done. So they induced at 38 weeks and I refused pain meds and the nerve blocker because I had to still do therapy and I needed to be able to walk up, walk around and get up. So yeah, it was a natural birth and went great.
Alan Helgeson:
And they just kept driving back and forth, back and forth from New Ulm. You get to know which convenience stores have the best coffee and donuts along the route. After a while. A long while.
Chrystal Moldenhauer:
We did that for my entire pregnancy until she was a year old. So for two years and then we moved back to Wisconsin. So we never moved to Sioux Falls at that point. We moved to Wisconsin to give her a chance to get to know her 27 cousins in Wisconsin, and I tried a different CF center there and also had poor results.
So then I started commuting from Wisconsin, not moving here yet. We commuted for almost a year I think. And every time I’d be hospitalized they would come and stay in a hotel for that two weeks. So we were draining our savings and we were also paying rent in Wisconsin and et cetera.
And I was getting sicker and sicker because the new medicine had stopped working and they were developing a newer one but it, I wasn’t having, I wasn’t able to take it yet. So that was when we made the decision when she was 3, we need to move to Sioux Falls so we can be together as a family. Otherwise, she’s not going to have a mom for much longer.
Alan Helgeson:
Unfortunately with Chrystal getting sicker, another move was necessary.
Chrystal Moldenhauer:
He didn’t have a job. We didn’t have a job. We knew one person, we had a place to rent and when we were sitting there signing the lease papers, we said, Hey, do you know anyone who needs a handyman? Someone who’s good at building things? And the landlord said, actually yeah I do. And that led to a job that lasted for six years and it led to so many connections and pretty cool.
Alan Helgeson:
Some of those connections began way before coming to Sioux Falls with a willingness to embrace science and clinical trials for CF research.
Chrystal Moldenhauer:
So I’ve always been interested in clinical trials partly because I know it’s the drugs can’t be developed unless people volunteer to take them. And I always try to come in at the end of the trial process. So it’s been proved safe. And the clinical trial for the drug Kalydeco, I was involved in it in 2008 already.
So then I am on standing notice with my friend at the University of Minnesota. If there’s a trial that I can be in, they let me do that. I’ve done them in Ohio. I’ve done them here in Sioux Falls. Just anything to get some newer meds going. Thankfully Sanford and University of Minnesota work together so they share information and they’ll call each other and say, Hey, this is a study that Chrystal might want to do. They all know I want to be in them (laugh). Sign me up.
Alan Helgeson:
Meanwhile, things just kept getting worse for Chrystal over the course of several years. The average day was filled with therapy of just trying to stay alive.
Chrystal Moldenhauer:
It was rough. I was doing probably eight hours of therapy a day. I would wake up at four and spend two hours clearing out my lungs before my daughter woke up to get ready to go to school because I wanted to be able to interact with her without feeling short of breath and crabby from that.
And then she’d go to school, and I’d go home and I would do therapy for as long as I could physically do it. And then I would take a break and walk the dogs or take a nap and then I would get right back at it until I picked her up from school.
And then normally we’d, you know, get her to bed at whatever time. So I’d have three or four hours with her when I could breathe well. But normally after about three hours my lungs started to fill up again and I couldn’t breathe. So then he would, my husband would have to take over and I would go do therapy and then go to bed and get up and do it the next day. It was my full-time job.
Alan Helgeson:
No time for work elsewhere or hobbies.
Chrystal Moldenhauer:
That was it. Yep. Nope, I didn’t have a job. My last hospital stay, I told my friend, I think this is going to kill me. Because I just couldn’t, I just could not get ahead of it.
Alan Helgeson:
In 2019, Chrystal began taking a medication for CF.
Chrystal Moldenhauer:
Well I remember taking the medicine for the first time. When I took it the first time, within an hour or two, it was like reverse drowning in a way. Stuff was coming out. I, it just, without any effort on my part, which is saying a lot because I was struggling to clear secretions before that medicine and this just thinned everything out. And it just was coming out for hours for about a day and a half probably. And then it was all out. There was nothing left in there.
Alan Helgeson:
That was 2019. Now, today, thanks to research, clinical trials, amazing medication breakthroughs and clinical expertise, Chrystal’s daily routine is a lot different.
Chrystal Moldenhauer:
So now I do this, a similar thing. I get up earlier than my daughter and I get my therapy done, but it’s just a half hour, it’s not two hours. And then I’m good to go until bedtime. So I have however many hours that is, 14 hours that I can have a job, which I have now and do homeschool with my daughter and do all her extracurriculars and do chores around the farm and whatever I want.
Alan Helgeson:
Oh, and they have a few animals to care for too.
Chrystal Moldenhauer:
So we have almost 80 animals here, chickens and sheep and dogs and cats. And so I enjoy animals and I’ll feed them and make sure their water is set and take care of any cuts or bruises or illnesses.
Alan Helgeson:
Chrystal, Lucas, Hadassah and their more than six dozen critters are doing great. Does this mean that Chrystal still doesn’t need medical care these days?
Chrystal Moldenhauer:
So I still see the pulmonary care team here at Sanford and that’s probably every six months instead of quarterly. It used to be every three months. So now it’s every six. And once a year I’ll see the endocrine for the diabetes.
And then as I age, you know you have those other issues that probably come up with just basic family practice doctor stuff. So 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. I’ll do my yearly checkup with her and then the normal female stuff or whatever, you know. But that’s about it for me.
Alan Helgeson:
And for their daughter, while you may be wondering, how is it determined if she may or may not have CF? Chrystal and Lucas already know the science.
Chrystal Moldenhauer:
So children of CF parents will always have the gene. They’ll have one copy because each parent passes one copy. So if both parents have CF, then yes, they’ll have two genes and possibly the disease. She just has my gene because Lucas doesn’t carry it. So she has one copy of the CF gene.
Alan Helgeson:
Hadassah knows having this one copy makes her special.
Hadassah Moldenhauer:
Well my mom always tells me that I have to drink a lot of – or, not drink – I have to eat a lot of salt. Not like just put it in a spoon and just – I have to, I like salt more because my mom always tells me that me and her both lose a lot of salt in our sweat. So we need to eat more salt on things.
I don’t know if this is with a lot of kids, but when I’m running most of the time like if I run for too long it gets hard to breathe a little bit or like stings, which is just, I think it’s probably just because of my mom and then well my gene. And then whenever I get sick, I get extra sick.
Alan Helgeson:
So what would Chrystal today tell 15-year-old Chrystal?
Chrystal Moldenhauer:
Oh boy (laugh). Good question. Oh man, I don’t know. Chill out maybe. I mean like, don’t worry so much. It’s going to work out.
Alan Helgeson:
A lifetime of experiences and many miles to get to specialist care have made Chrystal stronger and led her and her family to a community where care and cutting-edge research go hand in hand.
Chrystal Moldenhauer:
Yes, I’ve found real lasting partnerships with the care team here in Sioux Falls at Sanford. People that 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, and they’re more supportive of me not wanting to lose ground.
I’ve had other experiences in other care centers where I was told, well you have to expect to lose ground. It’s a progressive disease. And in my last virus I fought with back in spring, my doctor said, you know, we did one round of antibiotics and you’re not back to baseline. I don’t think we should stop Chrystal. Do not accept anything less than your baseline.
And I was like, wow, that’s awesome. That’s why we’re here is for that. A little bit aggressive, but I love it. That’s what I needed.
Lucas Moldenhauer:
Here we are where we wanted to be, where we needed to be, even though sometimes we didn’t know we wanted to be here. But we found home, and we love the Sioux Falls metro, we love the Sioux Falls Sanford medical team, and it’s just all come together.
Chrystal Moldenhauer:
God always gives us what we need and adequate. He puts us where we need to be with the people we need. So I’m just very thankful.
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