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.
My life after a 2011 lung transplant was going along smoothly -- until chronic rejection and the wait for new lungs while hospitalized took me to my physical and emotional limits.
June 26, 2018
The Story Behind My CF Tattoo
Food for Thought: Lessons From My Son’s Road to a G-Tube
Imagine seriously questioning your reality to the point that you doubt what you're seeing when you open your eyes. I wanted nothing more than to be alive, but what I experienced was nothing short of a nightmare. The only thing that convinced me of my
existence was the continuous buzz of monitors that kept me alive, illuminating my hospital room and proving to me through a rhythmic beat that my heart was still doing its job.
I had undergone a double lung transplant in 2011. Recovery and life afterward had
gone smoothly. Then in early 2016, I found myself in chronic rejection. My body declined rapidly between April and June, when my medical team told me I would need to be hospitalized until I received a new set of lungs.
The hospital had a way of stripping down a once confident, secure person into fragments of my former self. After I was admitted to the hospital, it didn't take long for the transformation to happen. My once strong, athletic body became a distant memory.
Within a month it had been reduced to an 83-pound shell of itself. I started to deteriorate emotionally, too.
I reverted to the once shy grade schooler I had been, knowing I could no longer relate to my peers. I made an effort to check social media and it filled me with envy. Self-pity was not too far behind. My entire world had been put on hold indefinitely, so I decided to imagine everyone else's had too. I did not enjoy who I was this way and I knew deep down inside I was only making it worse on myself. At times I questioned
if I even deserved another chance.
I couldn't talk. I was trached (had a tracheostomy) and hooked up to a BiPAP machine, which took some of the effort out of breathing and allowed my body to rest. That's what breathing was to me now, work. I tried my hardest to do it on my own for as
long as I could every day. All I could do was focus on breathing. It consumed my every waking thought and the slightest shallow breath was all I could manage.
Not being able to breathe soon became a welcome excuse not to communicate anymore. The idea of explaining my thoughts with words was frightening and I couldn't risk becoming emotional. It kept me from having to admit that I was scared and had doubts about
whether continuing to “live” like this was worth it.
Part of being re-listed for transplant is maintaining not only your physical strength but your mental strength so you can meet the demands of a second
lung transplant. It wasn't long until feelings of depression set in, but I didn't want to show any signs of mental weakness.
The few times I'd decided to share my feelings, it was with a palliative care worker. She always seemed to appear in my room when my energy was flagging. It was almost as if we had some psychic connection and she knew I needed someone to be there who
I wasn't afraid to share my true feelings with.
Admitting how I was feeling led to despair for my situation and sadness for how it was affecting my loved ones. They sure didn't deserve this, and it crushed me seeing them go through the nightmare alongside me. Once the emotions set in, tears followed,
and I soon realized I could not control my breathing anymore and I went into respiratory distress. This led me into the intensive care unit (ICU) and it didn't take long before I learned to just not “go there” with my emotions anymore.
I soon became emotionally unavailable. My happy-go-lucky spirit might as well have never existed, and I no longer invited the once welcome flow of visitors. I didn't want anyone to see me this way. It wasn't because of the endless amount of tubes zigzagging
through me, it was because I was a hollow version of myself. There wasn't anything that could convince me differently and I was lost in the monotony of “living” in the hospital, or in my case, dying.
There was no sleeping through this journey. There was really nothing left to do except hope that a match would come while I was still strong enough to accept it. The mental battle waged on, all the while my fight or flight instinct wanted so badly for
me to just run away. Every cell in my body was screaming “get me out of here!” It's truly amazing how quickly a body atrophies and I just hoped my mind didn't do the same -- although there were times when I thought it would be a welcome break from
what I was going through.
I finally sucked it up and allowed myself to feel some emotion again after almost two months and spoke with my palliative care worker on the morning of October 11, 2016. By the end of our conversation, most of which was her allowing me to voice all my
newly developed trauma, I felt mentally reset and told myself, “You've got one more month left in you.” The relief of letting myself feel after keeping it in for so long in fear of not coming back from it was indescribably satisfying; so much so that
some of that energy must have been put out in the universe that day.
That evening my nurse practitioner sat at the end of my bed and said, “I heard you had quite a day.” With a nod of my head I agreed. He then went on to tell me that a match had just come in and they would be preparing me for surgery shortly.
When I think back to that moment, my body relives the sensations I felt but there are no words. A tragedy just occurred -- a family was without their loved one, and because of that I was given a chance to walk out of the hospital, to get out of bed, to
eat again, to talk, to share and live, and return to my former self. What energy did I generate this morning to create this sudden turn of events? I felt guilty yet vindicated, sad yet elated, depressed yet hopeful. I went from not allowing myself
to feel anything to feeling every single emotion at once.
I'm still coming out of the isolation from that hospital stay and have a newfound respect for mental health and illness. I always thought my mind was strong enough to deal with anything, but I'm beginning to realize after almost 38 years that it's okay
to have moments of weakness.
After all, being placed in uncomfortable situations is when the most beautiful growth takes place. I just feel lucky to still be alive to experience that personal growth after feeling so mentally trapped. Now when I open my eyes I don't need the buzz
of a monitor to remind me I'm alive. I have the smooth rise and fall of my chest, knowing that with each effortless breath, oxygen is being sent throughout my body, and I'm alive.
Adult with CF
Samantha, who was diagnosed at age 3, has been living with cystic fibrosis since 1980. Originally from Wisconsin, she has lived in California since 2003. Samantha earned her bachelor’s degree in social science and health with a minor in sociology. She helps adults in the criminal justice system as a case manager for the Alternative Sentencing Program under the Plumas County District Attorney’s Office. A firm believer in exercise, Samantha kept her lungs healthy through her late 20s but at the age of 31 she underwent a double-lung transplant. She went for five years without being hospitalized or needing to rely on portable oxygen, before she developed chronic rejection in the spring of 2016 and had to be hospitalized until she could receive new lungs. On Oct. 11, 2017, she received the gift of life once again and has been doing well ever since. Samantha spends her free time rock climbing, mountain biking, traveling, and volunteering with her local CF chapter. She is also a member of Community Voice and is a mentor for the CF Peer Connect and the Lung Transplant Foundation.
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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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