Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Being hospitalized with COVID-19 was isolating, even my daughter was not allowed to visit. But, thanks to the women and men who provided my care, I was never alone.
June 12, 2020
My Experience With Telehealth
How I Combat CF Survivor’s Guilt
I wasn't feeling well. I had let myself get run down -- putting off getting a tune-up. I had a dry cough that was painful, and I was clearing solid, large translucent things like I'd never seen before. This went on for three days. I thought it was normal
cystic fibrosis stuff. My CF doctor, Richard Belkin, MD, medical director of the Santa Barbara Cottage Hospital CF center, also saw this as a CF exacerbation and decided to admit me after seeing some gnarly photos of what I coughed up.
I did not have a fever when I left home, but by the time I had driven to the hospital two hours later, I had a fever of 102. At that point, my doctor recommended I be tested for COVID-19 and -- after four days -- the results came back positive. This is
when the story of wonderful humans began.
It's hard to put into words the wonderful, loving care I received while I was inpatient at Cottage Hospital in Santa Barbara from March to April. At first I was being treated with intravenous antibiotics for a CF exacerbation but the concern about COVID-19 was there. My doctor told my daughter in Colorado that she should come. We could see each other only through a window and talk to each other on the phone. She was able to say, “I love you,” and
that, alone, was worth her travels.
When my COVID-19 test came back positive, I was transferred to the COVID-19 unit. Things were mild at first, but then my condition took me from being a healthy-ish CFer to one who could not get out of bed or eat. There were abnormal results from blood
tests. I then needed oxygen, and was transferred to the intensive care unit (ICU). I spent five rough days there.
I remained in inpatient care longer than some because I live alone. Before I could be discharged, I needed to show that I was well enough to cook, do dishes, and walk around my tiny apartment. I had concerns.
What if I got worse? How would I get back home if I could not drive myself? Because I had COVID-19, I could not -- in good conscience -- ask family or friends to help. My doctor understood this.
I stared to get more concerned when -- in the COVID-19 ICU -- my nurse described my lung sounds as “quite poor.” When I asked what that meant she said, “You know that sound Velcro makes when you pull it apart? That's what your lungs sound like.”
The care I received went above and beyond -- in my opinion. Nurses put icepacks in my armpits and around my neck when my fevers reached 104 degrees. My lab results were worsening. In particular, my levels of c-reactive protein (a measure of inflammation),
was more than 300 (normal is less than 10).
Then, before a ventilator was needed, I turned the corner. Was it a controversial dual-med therapy my doctor prescribed, the loving care, or the prayers? Gratitude overwhelmed me. Nobody, including me, expected me to survive this.
I returned to the COVID-19 unit. My fevers were lower, although I still needed oxygen, but not a lot, and eating did not appeal. The full health care team helped me through these times and others - the nightmares, the panicked moments of coughing,
and through the inability to make it to the bathroom. Humor also played a role as -- day-by-day -- I would identify with such characters like Eeyore, Piglet, and Dory the bluefish all while experiencing short-term memory loss. My nurses and I
laughed a lot as my walks around the unit turned into a dance party with an oxygen tank and monitor in tow. Light moments…amid the heaviness.
My physician, the nurses, the care techs, and the respiratory therapist were heroes. More than that, they all helped me to feel human, valued, and hopeful. They provided comfort in times when I could not comfort myself.
And, they did their jobs flawlessly amid all the new rules on virus control. Of course, I was not their only patient, yet they navigated through it all with masks, gowns, gloves, and face shields without complaint. I went home after 22 days of being
an inpatient at the most wonderful hospital one could imagine. Central Coast Home Health provided wonderful home nursing care and physical therapy window appointments. My local fire department did daily check-in calls with the RUOK program and
delivered prescriptions and groceries.
I am still recovering more than eight weeks later, yet in milder ways. I randomly had fevers reappear for two evenings, although they weren't as high as when I was hospitalized. Before COVID-19, I was as active as my lungs would allow…a healthy sick.
Now, I need oxygen to sleep and for any exertion, which was not the case prior to COVID-19 -- like the 5 minutes of dancing I do for my cardio -- so fun! I even need oxygen to walk on flat land at sea level. Before COVID-19, I only had to use
a mini-oxygen concentrator for hiking up hills and for air travel.
My biggest issues have been with hemoptysis which seems to be remedied by Trikafta™.
And, I am relatively old for someone with CF who has all their original parts. I am in currently in the evaluation process for a double lung transplant.
The wonderful humans who cared for me during my COVID-19 journey -- and continue to care for those who are sick and alone -- are extraordinary.
They protect themselves -- yet are exposed daily to this hyper-contagious virus. And, in spite of the enormity of this, their loving care perseveres. While it is true what they say, that those who die of COVID-19 die alone -- without their families
and loved ones near. Yet, from the inside, I can attest that they do not die alone. The hospital staff are giving bedside love and care, freely. Watching my healthcare team's devotion to their vocation of caring is all so overwhelming to try at
all to put it into words.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Originally from the Chicago suburbs, Kay moved to the central coast of California in 2014 to enjoy a more active outdoor life as the winters in the Midwest were difficult. After working as a graphic designer and then as a project manager for a marketing/PR firm before cystic fibrosis caused her to stop working, Kay is now an artist! Her daughter, Ashley, lives in Colorado.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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