Who's Who: Your CF Center Team

Pediatric Pulmonologist

The pediatric pulmonologist specializes in the treatment of lung disorders, including CF, and diagnoses respiratory conditions and will recommend the most effective course of CF treatment for your child. Your pediatric pulmonologist may coordinate with other specialists, including GI, endocrine, radiology, and/or surgery should the need arise, to give input on your child’s treatments.

CF Nurse

Your CF nurse provides direct, individualized care and is your primary point of contact during and between office visits. Your CF nurse may provide a range of supportive functions that may be social, emotional, or clinical based on your child’s individual needs.

Dietitian or Nutritionist

The dietitian or nutritionist will develop a daily schedule for you and your child to reach caloric and nutritional targets. Your daily nutritional schedule may include both vitamin and feeding supplements and pancreatic enzymes as appropriate.

Social Worker

The social worker will discuss your home environment, such as second hand smoke, and your daily routine. The social worker will review insurance, financial, and support system issues with you. The social worker may have strategies for helping you, your child’s siblings, grandparents, school and daycare to cope with living with CF.

Physical Therapist or Respiratory Therapist

The physical therapist or respiratory therapist will help you with airway clearance techniques. The physical therapist or respiratory therapist can also demonstrate proper use, care, maintenance and disinfecting of nebulizers, and can educate you on the use of other respiratory therapies.

Psychologist or Psychiatrist

The psychologist or psychiatrist can help you, your child, and your family cope with the CF diagnosis. The psychologist or psychiatrist can offer support and strategies for living and thriving with CF.

Your child’s team of health care professionals is standing by at the closest CF clinic, ready to become an integral part of your family’s CF experience. Knowing what to expect at that first clinic visit can ease some of the anxiety you might be feeling, so please join us for a walk through the “virtual” CFvoice cystic fibrosis center. Here, you can arm yourself with information to help guide your family’s Bearfirst steps down the path of life with CF.

Glossary

Airway

Airways are passageways for air into or out of the lungs. There are many airways of varied sizes. The trachea is the largest airway between the throat and lungs. The trachea branches into smaller airways called bronchi, which then divide into bronchioles and which turn into alveoli, the smallest airways. The alveoli are where the exchange of oxygen and carbon dioxide take place.

Bacteria

Bacteria are tiny organisms (also called a microorganisms) that can cause infections. For people living with CF, bacteria can lead to chronic lung infections (often caused by the bacteria Staphylococcus aureus and Pseudomonas aeruginosa). Your CF care team can help you with ways to lower the risk of or fight bacterial infections.

Blood Work (or Labs)

Following diagnosis, blood tests are used to measure liver, pancreas, and kidney function, nutrition, inflammation, and general health. The test results are shared among the CF care team members, including the pediatric pulmonologist, and nutritionist, to develop an individualized treatment plan for your child.

Cystic Fibrosis

Cystic fibrosis (CF) is hereditary and appears only when a person inherits a pair of chromosomes, one from the father and one from the mother. CF is a disease that affects the exocrine glands resulting in thick, sticky mucus that builds up in the lungs and digestive tract. Symptoms include faulty digestion, breathing difficulties, respiratory infections and excessive loss of salt in sweat.

Cystic Fibrosis Foundation

Established in 1955, the Cystic Fibrosis Foundation (CFF) is a leading nonprofit, donor-supported organization working to extend and enhance life for those with cystic fibrosis. It funds and accredits more than 115 CF care centers, 95 adult care programs and 50 affiliate programs, and has 80 chapters and branch offices nationwide. Today, the Foundation currently supports the development of more than 30 potential CF treatments.

Enzymes

Proteins that help make and increase certain chemical processes in the body, like the breaking down of foods in digestion. Because people with CF have mucus that often blocks the passageways (or ducts) through which digestive enzymes from the pancreas flow, they may need enzyme replacements to digest food.

Forced Expiratory Volume in the first second (FEV1)

The volume of air that can be forced out in one second after taking a deep breath. The FEV1 is an important measure of pulmonary (lung) function and is used to track the progression of lung disease over time.

Mucous membranes

Tissue that contains mucus making glands. Mucous membranes are found in the nose, mouth, lungs, esophagus, stomach and intestines. The mucous membranes in the respiratory and digestive tracts support nutrient absorption and secretion of mucus, enzymes, and salts.

Mucus

A thick, sticky secretion produced by mucous membranes to moisten and protect the membrane surface.

Nebulizer

A nebulizer is a type of device that produces an extremely fine spray for deep penetration of the lungs.

Pulmonary Function Test (PFT)

Pulmonary function tests (PFTs) are a group of tests that check lung function (how well the lungs inhale and exhale, and how effectively they pass oxygen into the blood). Your CF Pediatric Pulmonologist will use a PFT, along with your child's medical history and physical exam, to help diagnose a health problem and decide what therapy to prescribe.

Spirometer

This is an instrument used to measure the volume and flow of air entering and leaving the lungs.

Sputum

The mucus or phlegm coughed up from the lungs, bronchi, or upper respiratory tract.

Sweat Test

A test to diagnose cystic fibrosis. This test measures the salt (sodium and chloride) concentration in a patient's sweat.

Sputum/Throat Cultures

A laboratory test done using a sputum or throat swab to isolate and identify germs that may cause infection in the respiratory tract.

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