Salir
Your primary pulmonologist has years of extra specialist training in treating lung diseases and will create and update your personal cystic fibrosis care plan. They’ll work with you, your family, and the rest of your care team to treat complications and make sure you’re aware of new medications and therapies.
Living with cystic fibrosis can be hard — physically and emotionally. That’s why our care teams provide treatment, education, and support to our patients and their families. And why you, as a patient, get evaluations from your entire care team at least once a year — including your doctor, nurse, respiratory care practitioner, dietitian, physical therapist, and social worker. Together we help slow the progress of the disease, foster normal growth and development in children, and empower you and your family to live full, independent lives.
Our Southern California location is recognized by the Cystic Fibrosis Foundation as a core center for care that promotes patient quality of life and longevity.
At this location, you have convenient access to:
- Specialty clinics for pediatric and adult cystic fibrosis patients
- On-site labs and pharmacy
- Most cystic fibrosis medications available for same-day pickup
Being a teenager is hard for anyone, but for Gabriel Abarca it felt hopeless. At 14 and with cystic fibrosis, he suffered the loss of his sister. Fortunately Abarca’s care team had bright hopes for his future. Their close relationship helped Abarca change his outlook. Now at 25, he’s employed, enrolled in college, and happily married.
Cystic fibrosis is a genetic disease that thickens the mucus in your body. The mucus can block airways and other important passages in your digestive system and other organs. In most cases, it’s caused by a gene mutation passed down from both parents.
Symptoms of cystic fibrosis
Common cystic fibrosis symptoms in infants include breathing problems, salty skin, not growing or gaining weight even with a good appetite, and chronic diarrhea.
Testing for cystic fibrosis in infants and children
Most babies are screened for cystic fibrosis at birth using a few drops of blood from a heel prick. If this test is positive, the baby will be seen in our Cystic Fibrosis Center where doctors will order more tests. This includes a cystic fibrosis sweat test that measures how much chloride, or salt, is in your child’s sweat.
Adult screening for cystic fibrosis
It’s possible for people with milder forms of the disease, or rarer cystic fibrosis gene (CFTR) mutations, to not have noticeable symptoms until their teen or adult years. Talk to your primary care physician if you have concerns. They can examine you and, if appropriate, refer you for more testing.
Adult screening for cystic fibrosis genes
Adults can be tested to see if they carry a copy of the mutated CFTR gene. Most experts recommend that anyone who’s pregnant or thinking about becoming pregnant should be tested to see if they carry a copy of the gene. If your test is positive, your partner should also be tested. A child must inherit 2 copies of the mutated gene, 1 from each parent, to develop cystic fibrosis. But even if both parents test positive for a mutated CFTR gene, it doesn’t mean the child will have cystic fibrosis. A genetic counselor can help you understand the meaning of your genetic test results.
Our Southern California Cystic Fibrosis Center belongs to a nationwide network of accredited core centers, recognized by the Cystic Fibrosis Foundation for their comprehensive care and for promoting patient quality of life and longevity.
With pediatric and adult cystic fibrosis clinics and an on-site lab and pharmacy, you can get the care you need in one convenient stop.
Your nurse case manager is your main contact for concerns and questions. They’ll coordinate your medical care with all the members of your care team, talk you through your cystic fibrosis care plan, and help you get medicine and equipment. If needed, they can help you communicate with other health professional and family members about your condition. They can also direct you to resources for managing your disease.
Airway clearance therapy is key to respiratory health with cystic fibrosis. This involves loosening mucus to remove it. Your respiratory care practitioner will teach you and your family how to use airway clearance devices, aerosol therapy, and other home therapy techniques. They’ll also regularly test your pulmonary function, or how well your lungs are performing. If needed, they’ll work with your pulmonologist to adapt therapies to make it easier for you to follow your treatment plan.
Most patients with cystic fibrosis struggle to fully digest food, which leads to poor nutrition. For children, this can make it hard to grow and gain weight. Adults can struggle to maintain their ideal body weight, which is key to helping fight off infections. Your dietitian will track your growth, weight, and vitamin supplements to help you improve your food and nutrition intake. If you have pancreatic insufficiency — when the pancreas doesn’t produce enough enzymes to fully digest food — they’ll help you manage your pancreatic enzyme dosage.
They can also manage complications like cystic fibrosis–related diabetes and osteoporosis.
Regular exercise builds strength, gives you energy, and improves your overall health so you can live a full, active life. Physical fitness can also improve your ability to cough mucus out of your airways, which is critical to better lung function with cystic fibrosis. Your physical therapist will work with you to design a fitness program to build or regain muscles and improve your endurance and posture. They may also help you learn airway clearing techniques.
All new patients meet with a social worker to help with resource referrals, education, and counseling. Your social worker is there to help you and your family balance the demands of cystic fibrosis with living your life.
If you’re a patient with cystic fibrosis who needs urgent medical attention, please go to your nearest urgent care location. An urgent care need is one that requires prompt medical attention, usually within 24 or 48 hours, but is not an emergency medical condition.
If you believe you have an emergency medical condition, call 911 or go to the nearest emergency room.*
After you’ve been seen in either urgent care or an emergency room, ask the physician to contact the on-call pulmonologist at Kaiser Permanente Los Angeles Medical Center.
Footnote
*If you believe you have an emergency medical condition, call 911 or go to the nearest hospital. For the complete definition of an emergency medical condition, please refer to your Evidence of Coverage or other coverage documents.
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