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 Understanding and Working with your CF Healthcare Team
People with CF have a unique set of health needs. Currently, there are 42 CF clinics across Canada providing specialized care to, approximately, 3,800 individuals with CF. Nearly 60% of all individuals with CF in Canada are adults. This trend towards older CF patients is expected to continue. Thus, adult CF clinics are committed to providing age-appropriate services to their patients.
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The CF Healthcare Team
CF is a complex disease that involves many organ
systems in your body, and affects your daily life. As such, caring for people
with CF requires a team of many specialists. The CF team must be prepared to
manage:
- Respiratory (chest) infections and complications
- Gastrointestinal (stomach and bowel) problems
- CF related illnesses such as diabetes, osteoporosis and arthritis
- Psychosocial issues
The CF team also provides referral services related to fertility and
pregnancies, genetic counseling and lung transplantation. Depending on the size
of the CF clinic, the following team members are available full- or part-time.
Doctor
Doctors who treat adults with CF are usually specialists in respirology (chest medicine). But sometimes a gastroenterologist (stomach & bowel specialist) or other specialist with extensive training in CF will fill this role. Your doctor does regular physical examinations, manages medications and requests and analyzes appropriate lab tests. He or she will refer you to other medical or surgical specialists as necessary. The doctors at CF clinics often serve as the Adult CF Clinic Directors.
Nurse
Each CF clinic has a coordinator, usually a nurse who works closely with you and the rest of the team to manage your treatments. The nurse coordinator is an excellent resource, especially if your doctor is away. Additionally, some people feel more comfortable with the nurse when they need to ask questions, which they are too embarrassed to ask the doctor. A nurse can provide practical information about your healthcare routines, your medications and related equipment. The nurse coordinator often helps to organize services such as home IV antibiotic therapy.
Dietitian/Nutritionist
A dietitian or a nutritionist will be available to "custom design"
a nutrition action plan to make sure that you receive the nutrients and energy
(calories) you need.
The nutritionist will help you with your dosage of pancreatic enzymes to
reduce stomach and bowel problems such as constipation, diarrhea, gas, cramps
and bowel obstruction. He or she can help you with commercial nutritional
supplements (calorie booster drinks) if you need them. He or she can also help
you manage your nutritional needs related to CF diabetes, osteoporosis (thinning
of bones), pregnancy, breastfeeding, exercise and transplantation.
Social Worker
The social worker can assist you in a variety of ways, ranging from dealing with financial concerns to helping you learn coping skills for living with CF. As well, he or she can provide information on the services that are available in the hospital, in your community, and those that are sponsored by provincial and federal governments.
Physiotherapist
The physiotherapist will help you find ways to fit physiotherapy treatments into your daily routine. Airway clearance techniques help clear mucous from your lungs so that you are less likely to get lung infections. He or she can teach you different ways of clearing the mucous and the best ways to maintain your respiratory equipment. With your input, the physiotherapist can also design an exercise program that best fits your needs.
Respiratory Therapist
The respiratory therapist does your pulmonary function test when you go to your CF clinic or when you are in the hospital. He or she also helps maintain oxygen levels while you are in the hospital and organizes the home oxygen if necessary. In some cases, the respiratory therapist or other exercise specialist may help to do a cardiopulmonary test (exercise test).
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Staying Involved with Your Team
Each member of the team is a source of ongoing support and information. So it's important that you feel comfortable speaking with them about your health, and any information that could affect your treatments.
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If you are moving from a pediatric CF clinic, you
probably will have met some of the adult CF team members during the transition
clinic. Some centres now have transition clinics
to help ease the transfer to an adult centre. Most people transition from pediatric to adult CF
clinics when they turn 18 years old.
If you live close to a CF clinic, you will likely rely on the clinic for most
of your healthcare needs. However, it is recommended that you also have a family
doctor that can help you with coordinating all aspects of your health.
Women with CF should find an obstetrician/gynecologist (doctor who
specializes in women's health) who is familiar with CF, especially if a
pregnancy is planned. He or she should also be experienced in handling high-risk
pregnancies.
Keeping yourself in the best possible shape mentally and physically is
important when you have CF. It is a good idea to keep in close contact with your
CF clinic team so that you receive the best possible care, and keep up to date
with the latest therapies.
Reference
The information in this article was adapted from an article by Barbara Palys, Chairperson, International Association of Cystic Fibrosis Adults, Harvard, Massachusetts (in Genentech's CF Toolbox)
