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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
October 5, 2016
Unexpect the Expected: What I Learned After My Lung Transplant
Facing the Unique Challenges of a Late CF Diagnosis
After a long struggle to become healthy enough to be considered
eligible for a double-lung transplant,
I spent the next 18 months -- day and night -- glued to my phone, full of the anxiety of missing my call for transplant. I slept with my phone by my head and the volume turned all the way up. I left my phone face up when I was away from home. Even in movie theaters, where I had to turn my volume all the way down, I would leave it in the cup holder to ensure I would see it light up if a call came through. I also avoided all areas without service and stayed within 4 hours of the hospital at all times (one of the rules while listed).
At 1:40 a.m. on Oct. 20, 2015, I was awoken as my mom crashed through my bedroom door. Stanford's heart and lung-heart transplant team had found donor lungs. The words “we have a donor for you” still echo in my head when I remember it. I immediately called my brother who expressed shock and disbelief. I must have texted more than 100 people on the way into the hospital to share the news and thank them for their support.
Within 30 minutes, we were at Stanford. I was overwhelmed when everyone greeted me with happy intensity. A room had been prepared for me on the general medicine floor where cystic fibrosis patients are usually hospitalized. A nurse checked me in and for the first time, we didn't review my medications. That was when it hit me. There was no need to review my current medications because they would soon be different, treating my new lungs and body instead of my past self.
After I checked in, my team began to prepare me for surgery, mentally and physically. The first to greet me was a fellow from my familiar transplant team to reassure me everything was as planned and wish me luck. For the next few hours I sat in the room with my mother, brother and friend while my transplant surgeon's fellow came in to go over the details of the surgery, have me sign many different consent forms, sign to donate my old lungs to scientific research, and familiarize us with who he was. Around 9 a.m., I was taken to the operating room (OR), my family walking with me, holding my hand and pumping me up with encouragement.
I felt strangely calm and reassured. I kissed everyone goodbye and realized that if something went wrong, this would be the last time I saw them. I squeezed extra tight, told each person I loved them unconditionally and was wheeled into
the biggest OR I had ever seen.
There were machines everywhere and more team members than I had ever experienced before. There were nurses and technicians everywhere. Each had his or her own responsibility. Unlike the usual attitude of quiet competence that I found in most nurses, techs and surgeons, I sensed a feeling of fierceness in each team member.
I was instructed to lay on the T-shaped board that I would be on during surgery. Someone strapped me to the table for safety and placed heart monitors and an oximeter on me. The next step was accessing my port, securing an arterial blood gas line in my left wrist and placing a triple lumen line on the right side of my neck. Someone offered to give me some medication to soothe my nerves as the prep for surgery would take a little over two hours, but I refused. I wanted to be able to get confirmation the lungs were healthy and the surgery was going to take place before being sedated.
During more than two hours of preparation, the team received phone updates about the donor lungs. The donor team informed us that the lungs appeared healthy. They called again with test results for any “high-risk” possibilities such as cancer, HIV and sexually transmitted and other infections. The lungs were “perfect,” and the donor team was headed back with them. It felt real at that point!
An hour later (may I add that it felt like the longest hour of my life), my transplant surgeon called to tell us he was on his way into surgery. Thirty minutes after that, he walked through the door, completely excited and confident that the lungs were ready to be transplanted. At this point, I wrote a quick note for the surgeon to take to my family when he went to confirm that my surgery was a go. It reads, “I love you all with all my heart! I wouldn't be me without all of you. You're my world. Thinking of all of you!” It hangs on the refrigerator today to remind us of the moments we fought through as a family and that love conquers all.
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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