Accredited Cystic Fibrosis Center
The CHI St. Alexius Health Heart & Lung Clinic's Cystic Fibrosis Center is the only independent Cystic Fibrosis Center in North Dakota that is accredited by the Cystic Fibrosis Foundation.
Our Approach to Care
The Cystic Fibrosis Center adopted the care model developed by the Cystic Fibrosis Foundation. Our CF care center delivers effective and efficient healthcare for the chronic disease. Patients receive collaborate care from an interdisciplinary team of specialists.
Our dedicated care team includes:
- Adult and pediatric physicians
- Nurse practitioner and registered nurses
- Dietitian
- Respiratory therapist
- Pharmacist, and
- Social worker
About Cystic Fibrosis
Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system. According to the Cystic Fibrosis Foundation, about 30,000 people in the U.S. are living with CF. The disease causes the body to produce thick, sticky mucus which obstructs the airways of the lung leading to chronic infection and progressive lung injury. In addition, obstruction of the ducts of the pancreas impairs digestion and absorption of essential nutrients from the intestine.
Decades ago few children with CF lived into their teens. Now advances in research and treatments allow many CF patients to live into their 40s and beyond. In fact more than 45 percent of patients living with CF are now 18 or older.
Symptoms
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements.
For more information on Cystic Fibrosis - click here
For more information on Cystic Fibrosis Clinical Care Guidelines - click here
Recent Story
New Cystic Fibrosis Therapy...read more!
We believe in partnering with patients and families in an effort to promote health and longevity. We make every effort to assure that:
- Our patients and their families are full members of the care team.
- Children, adolescents and adults with CF will have normal growth and nutrition.
- People with CF will receive appropriate therapies for maintaining lung function and reducing acute episodes of infection. Pulmonary exacerbations will be detected early and treated aggressively to return them to previous levels of lung function.
- Our patients, their families and CF healthcare professionals are well informed and active partners in reducing acquisition of respiratory pathogens, particularly Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cepacia (cepacia) complex.
- People with CF will be screened and managed aggressively for complications of the disease, particularly CF-related diabetes (CFRD).
- Patients and their families will be well supported by our CF healthcare professionals when facing decisions about transplantation and end-of-life care.
Cystic Fibrosis Foundation Accreditation
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. CHI St. Alexius Health Heart & Lung Clinic’s Cystic Fibrosis Center has been a Cystic Fibrosis Foundation accredited center for more than 25 years. Our center undergoes thorough review by the CF Foundation’s Center Committee before it receives accreditation and funding. This review for accreditation occurs every year.
Newborn Screening for CF
Since Jan. 1, 2006, the North Dakota newborn screening panel of tests includes a screening for cystic fibrosis. While newborn screening should identify approximately 99 percent of infants with cystic fibrosis, an occasional child will continue to be diagnosed only when clinical manifestations suggestive of cystic fibrosis develop.
For more information on Cystic Fibrosis - click here
For more information on Cystic Fibrosis Clinical Care Guidelines - click here
Children’s Special Health Services, North Dakota Department of Human Services, may be able to assist families to pay for the testing to confirm diagnosis and treatment of cystic fibrosis. Please contact Children’s Special Health Services for more information at 701.328.2436 or 800.755.2714. To make an appointment at CHI St. Alexius Health Heart & Lung Clinic’s Cystic Fibrosis Center, call 701.530.7502 or toll free at 800.932.8848. If emergent care is needed, please immediately go to your nearest emergency and trauma center.
CF Connection Newsletter
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2019
Every May, the cystic fibrosis community comes together for CF Awareness Month. Cystic Fibrosis is a genetic disorder that affects the CFTR protein which is responsible for regulating the flow of salt and fluids in and out of the cells in different parts of the body. When both parents are carriers of a CF mutation gene there is a 1 in 4 chance of the child having Cystic Fibrosis.
For more information on Cystic Fibrosis, click.
Here is Monte's story.
How has CF affected your life?
I was born in October of 1991, at the children’s hospital in St. Paul, Minnesota, and had a meconium ileus shortly after and was sent for surgery. I grew up on a farm north of Linton, North Dakota, so I have a family history being in the agricultural industry.
Throughout my childhood I would say I lived an active, healthy life and was involved in numerous extracurricular activities. I don’t believe CF posed any disadvantages in any activities that I participated in. I truly felt that I had as much, if not more stamina than my peers. I’d say it helped dislodge mucus out my lungs which helped manage my respiratory secretions. I often tended to have higher pulmonary function test results during track season.
What challenges have you faced?
I was stumped by this question. That’s a good thing right? I’m a high energy person. I’ve always been on the more optimistic side.
Throughout my childhood, my organ functions operated at a consistent healthy function. I had daily meds and daily treatments. I’ve only been hospitalized one time, since early childhood, in 2010 for four days and that was for the H1N1 virus.
At the time I graduated High School, I started to notice more of a decline in organ function examinations. My liver enzymes became elevated, my pancreas was not contributing the amount of insulin needed to balance out glucose at a normal level, and my lung functions were heading in the path of a slight decline.
I was fortunate enough to be chosen for the Vertex 445 Study (now known as Trikafta) in September 2018, three years after I graduated from college. This was LIFE CHANGING. I knew immediately I was not on the placebo, my wife said even your clothes smell different. My digestive check engine light came on first. The results of my PFTs drastically went up. In three to four months I noticed a pretty substantial change. I will remain on the study and will continue to participate until my last visit in November of this year. Post study I will need to receive the medication through prescription.
What changes have been offered by your provider or the CF community to help you stay healthy?
My family has been avid members of CFA of ND. My parents were board members and my wife is a board member now. We’ve been involved in numerous fundraising efforts. We are fortunate to have CFA of ND to help cover expenses, medical travel and medications. I also received college scholarships for North Dakota State University through CFAND. We see ourselves more involved as donors than recipients with our current condition, that’s not to say I won’t utilize it in the future.
The CHI St Alexius Health medical team (Heart & Lung Clinic) in Bismarck, North Dakota has helped me stay healthy. Debra Fueller is a team member who has followed me for a long time and feels like a life-long friend. She takes pride in a personal approach. The CHI St. Alexius team also has diabetes specialists that I see for CFRD, or CF-related diabetes, as well as other team member specialists. They also recently started an advocacy group.
I see the CHI St. Alexius Health Team twice a year and I alternate with two visits yearly to M Health Fairview Clinics and Surgery Center, with the CF Team and Dr. Jordan Dunitz in Minneapolis, Minnesota. Currently the Vertex 445 Study pays for transportation to conduct the study. After study, my proposal is to see Dr. Dunitz’s team once a year in the summertime if I remain in stable/healthy condition.
How has CF impacted your reproductive health?
CF poses a challenge that can be overcome, for reproductive health. Kaylin (spouse) and I were blessed with two children of our own. Our daughter was born in October of 2018 and our son was born in December of 2020.
How do you see your future and how is it different than 10 years ago?
I’ve always been moving forward. I was able to graduate high school in 2010 and received a bachelor in science degree in Civil Engineering from North Dakota State University in 2015. I’ve been working as a Roadway Design Team member with the North Dakota Department of Transportation since 2014.
CF can come with fears of finances and affordability, so it’s important to know that for the next person there is help – emotional support, financial support and help with medications. I take daily meds and have daily treatments, other than that CF is pretty minimal - just 30 minutes in the morning and 30 minutes before bed at night - and sometimes not even that.
I would tell people not to let cystic fibrosis hold you back. There’s a lot of cool research. There’s always been ideas about down-the-road cures. Now we’re getting actual results. The pediatric CF doctor, who is one of the physicians who oversees the Vertex study, is optimistic that by the time she retires there will be a cure for CF. The future of CF is a lot different from the past.
