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.
After my transplant team said I was too sick to undergo a double-lung transplant, I was determined to get well enough so that I could.
April 11, 2016
Improving Lung Transplantation Outcomes: The Time is Now
One Thing I Wish I Knew Before My Double-Lung Transplant
After about a month in the hospital, my doctors told me that my body was failing and I was too sick to undergo a double-lung transplant; that I wasn't going to survive. It had been a rough several months. I had been working as a pastry cook in one of the top restaurants in San Francisco -- Gary Danko. I was proud to have this job, and I ate, drank, slept and breathed the culinary lifestyle. My part-time schedule quickly turned into more than 13-hour days, five days a week.
The culinary lifestyle had some serious drawbacks for a person with cystic fibrosis. I spent hours in the freezer followed by time in the hot kitchen -- the perfect recipe for pneumonia and infection. My cough increased and I began losing weight. But my passion for my work kept me from, what I considered at the time, surrendering by hospitalizing myself.
One morning, I woke up gasping for oxygen and struggling to walk. I had no choice but to go to the ER. Hoping my treatments and medication at home would smother the infection was no longer an option. The reality of how much my body had declined was horrifying. My lung function had dropped drastically from 40 percent to 18 percent. I had lost 22 pounds from my already slim frame of 88. I was given total parenteral nutrition (TPN) and lipids, both necessary for my survival, while also being encouraged to do oral intake when I felt strong enough to eat.
Not only had my physical health diminished, but my care team considered me too “noncompliant” with my daily treatment plan prior to my hospitalization. My team connected me to palliative care and planned on discharging me as soon as I was stable enough. They also discussed a do not resuscitate (DNR) form with me. They explained that if anyone were to resuscitate me with a lung function so low, my odds of coming off a ventilator were slim. And if I was not listed for a transplant, there would be no positive outcome for me -- leaving my family with difficult decisions to make (or for me to make myself through a living will or advanced directive).
I felt completely hopeless. The reality of the situation was scary. To me, it wasn't so much facing death as it was leaving my family. Family members came to say their final goodbyes. Person after person tried to hold back tears, told me not to give up, but I knew, and they knew, that they were saying goodbye.
I was ready to go on palliative care. Yet at the same time, I reminded myself that I was given this life because it was meant for me and I was thankful for it, as I still am. I am thankful that my siblings are healthy every day and I inherited the two CF recessive genes.
As I prepared to leave the hospital, I asked for a list of all the reasons I wasn't able to be listed for a transplant. Then, my team, my family and I made the list of “impossible” goals:
My family saved my life. They gave me the encouragement I needed to believe in myself and the want and will to live. My life seemed overwhelming; but my mom gave me hope. She dedicated herself to keeping me alive. The day before I arrived home, she cancelled palliative care for me. Instead, she had oxygen installed at home, along with all the necessities for my tube feedings and new medications. Coming home was one of my biggest victories to date.
Looking in the mirror for the first time was surprising. My body looked fragile, my skin pale, my nails and lips a blueish-purple from lack of oxygen. I was losing my hair and my facial features had become so gaunt it was hard to recognize myself. All that aside, I placed the “impossible” list on the front of my refrigerator, my DNR form on the side of the fridge. Every day for that next year I dedicated myself to checking items off that list until I was done.
The doctors told me I was going to die at 22. Now, three years later, I have new lungs and a new life. Turns out, the “impossible” is possible.
Adult with CF
Born and raised along the California coast, Caleigh was diagnosed at birth with cystic fibrosis. Growing up, Caleigh stayed healthy through sports and social activities. She later moved to San Francisco to attend culinary school. Despite her best efforts to balance health and happiness, she found herself with end-stage lung disease, frequently hospitalized and needing a double lung transplant. After receiving new lungs, she lives a successful life achieving new goals every day -- including chronicling her journey on her blog Fight2Breathe, and beginning her own legacy through her foundation. Follow Fight2Breathe on Facebook; @fight2breathe on Instagram; and @TeamCaleigh on Twitter.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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