Cystic Fibrosis (CF) is a multi-organ system disease affecting the lives of both the patient and his/her family. Patients travel from across the United States to receive treatment from our highly specialized team.
National Jewish Health has seven pulmonologists and two nurse practitioners who specialize in working with adult cystic fibrosis patients. These physicians oversee treatment of patients during outpatient clinic visits and during hospital stays to insure the greatest continuity of care. They also participate in laboratory research and direct both investigator-initiated clinical trials and those initiated through the Cystic Fibrosis Therapeutics Development Network (TDN). Our goal is to provide the highest level of clinical care while conducting research that improves our understanding of CF and the lives of our patients.
Diabetes associated with cystic fibrosis needs specialized care. Endocrinologists at National Jewish Health have extensive training in caring for CF patients with diabetes. The endocrinologist will work with you to:
Identify symptoms of hyper and hypoglycemia and how to treat hypoglycemia and monitor
- Teach you how to test blood sugars
- Train you how to use insulin pumps and continuous glucose monitors and to troubleshoot when these devices are not working
- Provide nutrition recommendations that incorporate needs for diabetes as well as cystic fibrosis
- Provide information on carb counting
- Provide information regarding insulin use and demonstrate of use of insulin pens/vials
The Adult CF Program has three nurse coordinators who organize clinic and schedule patients, necessary procedures, follow-up clinic visits and hospital admissions. They coordinate care between patients and physicians, endocrinologist, dietitian, social worker and respiratory therapist. In addition, they take care of insurance precertification for clinic visits, laboratory procedures and hospital admissions.
Living with CF comes with many challenges. The clinical psychologists at National Jewish Health help patients and their families manage the inherent stress that comes with having a chronic disease.
Respiratory therapists are available at all clinic visits and throughout any hospital stays. RTs are responsible for the following:
- Sputum induction
- Oxygen titration walk tests
- Post bronchodilator spirometry testing
- Education on airway clearance techniques (ACTs)
- Education on how to properly maintain and care for all respiratory supplies and equipment
- Education on how to properly prepare and administer inhaled medications
- Recommending and assisting with changes in daily respiratory care that may lead to improved patient outcomes
- Providing assistance with access to inhaled medications, oxygen therapy, and respiratory equipment
A registered dietitian (RD) is available to help CF patients optimize their nutritional status. When a person's nutrition status is better, so is his or her lung function. The RD's goal is to help adult CF patients personalize nutrition-related goals to their own lifestyle. During nutrition visits you and your RD will discuss:
- Personalizing weight goals
- Achieving optimal vitamin and mineral levels
- Accessing nutrition support programs
- Optimizing pancreatic enzyme dosing
- Pregnancy and lactation
- Bone health
- CF-related diabetes
Social workers in the CF team have an important role to play in helping patients and their families cope more effectively with the inevitable stress of having a chronic illness. By acting as an advocate for patients, social work assessments guide CF patients toward the following:
- Income support
- Housing resources
- Education/college grants
- Help with employment
- Liaison with other agencies
- Financial and benefit advice and how to apply for disability
- Patient assistance programs
- Social support
Our research coordinators are available at every clinic to discuss with you potential opportunities to participate in clinical trials. We are a site in the Cystic Fibrosis Therapeutics Development Network (TDN), and offer access to clinical trials for therapies still under investigation, as well as observational studies and studies that seek to identify new biomarkers of disease severity. The research coordinators also are available by phone at 303.270.2517 to discuss if you may be eligible for a trial. If you are enrolled in a trial, they manage all aspects of the study visits.