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.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
November 26, 2019
Don’t Be Afraid to Let New Friends Into Your CF World
Facing and Embracing CFRD
We are in a new age of cystic fibrosis. There are more adult CF patients (older than age 18) than children with CF -- around 55-45 percent, according to the most recent Cystic Fibrosis Foundation Patient Registry. I am among the 55 percent, and I find myself inside the transplant world.
When I started seeking transplant beginning in 2018, I figured the transition would be just as easy as when I transitioned from pediatric to adult care. There were bumps in that process, but they soon were resolved, and I settled in like nothing had changed. Transplant was not so easy.
When we find ourselves in new places while traveling, we use a GPS or Google Maps to find our way. We have a back-up plan. The transition from the familiar to the new world of transplant is not so easy. With change in our lives comes anxiety about how to resolve the uncomfortable feelings from unfamiliar circumstances. We become so accustomed to the familiar faces of our care teams, the new faces of transplant doctors can be worrisome. Will we get the same standard of care that our CF care team provides? The anxiety that can come toward the end-stage of lung disease and this transition of care should be addressed in a professional, unified manner.
In my experience, there were gaps in the process. For example, I needed many vaccines, some of which were associated with pediatric patients. The transplant center did not have these vaccines readily available, which delayed my inclusion on the transplant list. I also live a good distance from the transplant clinic and hospital, which made it more difficult for me. Luckily, I have an amazing CF clinic team that helped solve the vaccine problem.
I am working to be listed at two transplant centers, which led to me receiving conflicting recommendations. The transplant center at the hospital where my CF care center is located recommended that I change my health insurance to Medicare Advantage. The second transplant center recommended the opposite. To further confuse the situation, the social worker from my CF care center also recommended against Medicare Advantage because of known coverage issues related to immunosuppressant medications that recipients need to take following transplants.
More disturbing is that the transplant center at the same hospital did not communicate with my CF clinic about their recommendation. This lack of communication and conflicting information put a tremendous amount of stress on me, which is unacceptable. Especially when lives are at stake. It is my hope that better coordination between CF clinics and transplant centers will resolve this.
Don't get me wrong. Many transplant centers have become amazingly successful and continue to improve. However, if my experience is common, we need more standardized care and communication across all transplant centers. The CF Foundation and many CF care and transplant programs agree. Lung transplant referral guidelines, published in March 2019, seek to make this process smoother. And I quote, “Communication between the CF Center and Transplant Center is essential for a smooth transition.” All potential transplant patients should be given a copy of the transplant guidelines in clinic or by a transplant provider, as well as partake in discussions over them. I may not benefit from these improvements, but -- hopefully -- others will. And hopefully, the CF Foundation will see my experience as a sign that more work needs to be done to put these guidelines into practice.
By creating closer working relationships and sharing more information, transplant centers and CF care clinics will certainly help to ease anxieties and worries on all levels. This will also improve care for patients and the whole process for health care providers. We all have a responsibility in this transition.
Transparency, integration, and preparation between you, your CF clinic, and the transplant center also will ease the burden and fill in potential gaps by busy health care providers. Delays are costly to clinicians and patients alike. It is especially hard on those who face an hourglass running low on sand. Can we prevent and avoid small hiccups? Certainly! Here are some things I would suggest:
Nothing is worse from a patient's perspective than feeling like you are not getting the best care possible, being heard about your concerns, or facing problems from a lack of communication in the process.
If reading the book, “Salt in My Soul,” by Mallory Smith taught me one thing, it is that people with CF need to become more prepared for transplant and everyone -- patients, doctors, families, CF clinics, and transplant teams -- needs unification during these adverse times. Let us all be one in heart and health.
Adult with CF
Paul Merritt, born in Evansville, Ind., is a former student of Oakland City University in Indiana. He is an author who enjoys speaking and writing about his CF journey. He is committed to helping people with CF and those who deal with other chronic illnesses. Paul has had the opportunity to speak with families of CF patients at social gatherings hosted by the Cystic Fibrosis Foundation and welcomes those opportunities. In addition, he loves to cook and work out, and he credits his success in life to his tremendous faith. You can find Paul's author page on Amazon, or connect with him on Facebook.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails