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.
Although I went through a lung transplant evaluation, I decided not to be listed.
December 2, 2020
Mental Health Post-Transplant
How I Sustain My Daily Care
“Not yet, I'm not ready yet. This isn't what someone who needs a transplant looks like.” These words kept running through my head as I headed down the long hallway just over a year ago at Stanford Hospital during my six-minute walk for my lung transplant
A lung transplant evaluation was something that I had contemplated for a few years before I pushed the start button. In
those few years I did a lot of research, most of which involved talking to people who had already experienced it. I met with my local lung transplant team a couple years before the walk down that hallway. We determined I wasn't there yet, but I would
see them about once a year to reevaluate.
After getting Influenza A in March 2018 my lungs never quite recovered, and a little over a year later I knew I needed to have options ready for me. The decision to get an evaluation at Stanford was not an easy one. When trying to decide where to have
a lung transplant, I talked with many different people, mostly those that had chosen to relocate. The thing that really stuck with me was something one friend said, “Go where they do a lot of transplants.” I live in Utah and at my closest transplant
center, the University of Utah, they do not do a lot of transplants. But, I knew the doctors at the U so well that it made this decision much harder.
I ultimately decided to make an appointment with Stanford. I felt like I had done enough research to know what I was getting into, but I couldn't have been more wrong. When the packet from Stanford showed up, I was immediately overwhelmed. It included
financial information, travel information, living arrangements once transplant was complete, and
a list and schedule of all the tests that would be completed during my week at Stanford: a sniff test, esophagram, 18 vials of blood, right and left heart catheterization, and many more tests. After getting some test results, I then needed more tests
to confirm the results. There was a daylong transplant education class, and a social work interview. I had to choose a secondary care giver and make sure I had a plan in place for my children before I would be given the go-ahead to be listed for transplant.
All of this came with so much more emotion than I was prepared for.
I thought that I had sat with these feelings long enough, that I would be okay, but hearing the doctor tell you that you are “in the window and one more bad exacerbation could kill you” is never easy.
These are things I had definitely thought about, but hearing them out loud from a doctor that I had just met -- reality set in. Knowing that I had to make a decision that is literally life or death was so heavy. I wanted a transplant of course, but I
didn't want one tomorrow. They told me they have had people receive the call in a matter of 12 hours after being listed and others who had to wait years.
I still felt like my body had some time, but just how much was the question. On the last day of testing at Stanford, I received a call from my cystic fibrosis doctor telling me they would be working on getting compassionate use for the drug that would
later be called Trikafta®. Hearing these words brought a peace that I was searching for. My doctor thought it would take 3-4 months to get approval. How could I not wait four months for something I had been waiting 40 years for?
Undergoing all of the tests was physically demanding, and trying to process all of this information was emotionally draining. I'm the only one who could make this decision, but I'm also a very spiritual person. So I turned to God for answers. Whatever
that looks like for you is exactly what you should do.
After all of my testing was complete, the team reviewed my case and accepted me for transplant. But instead I chose to put transplant on hold for now. I decided to roll the dice and see how Trikafta® worked for me.
It has been a long road, but after 10 months on Trikafta®, my health is more stable than it has been in years. I still see the transplant team at Stanford regularly, about every 3 or 4 months. I'm definitely not out of the woods for needing
a transplant. But, I am much better off than I was, and feel that I can see exactly how Trikafta® will work over time.
Whatever you decide about transplant, don't wait too long to get the process started. I have already completed the necessary tests, so If things suddenly change with my health, it will be much easier for me to get listed than if I were starting from square
one. Talk with your CF team and see where they think you are. They are great advocates to help you get this process started.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Emilee is 40 years old and has cystic fibrosis. She has been married for 18 years and has two children, a 16-year-old daughter and a 9-year-old son who was born through gestational surrogacy. You can follow Emilee’s journey on Instagram.
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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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