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 they have been full of physical and emotional challenges, as well as life interruptions, multiple transplants have helped me become the person I am.
April 29, 2021
Marlene’s Story of Living 86 Years With CF
How I Stayed Positive With CF
When I was 17, I was told that a liver transplant would be my only chance at living due to severe gastrointestinal bleeding. This was a hard thing to hear at that age. As I waited for “the call” over the next 11 months, I did my best to live a normal life. Attending school and seeing friends, along with working a part-time job, helped keep my mind off things as much as possible. My parents have always said that getting up and moving around would make me feel better, and it usually did.
I went into liver transplant surgery on October 16, 2007. I was extremely weak after waking up from my 10-day induced coma. I was 18 and I had zero muscle -- I couldn't even take a sip of water or sit up in bed. It was very frustrating and depressing. However, with family support and physical therapy, I slowly regained muscle. I wish I would have known that my life was going to be put on hold for a year. I was immunocompromised, so I had to stay home from college, which set me a year behind all my friends.
Shortly before I turned 23, I was put on the kidney transplant list. I was so ill at my pre-op visit that I was hospitalized for two weeks prior to the surgery. Fortunately, one of my doctors -- a college basketball fan -- and several nurses joined me to watch games during March Madness. One of the nurses made cupcakes for my 23rd birthday. These small acts of kindness helped me cope before my kidney transplant.
My father gave me one of his kidneys on April 3, 2012! The recovery was easier than it was after my liver transplant, however, it was still tough. And while the transplant happened so far into the spring semester, I was fortunate that my professors agreed to work with me so I could complete my work by summer's end.
The hardest period of my life was leading up to my double-lung and second kidney transplants.
I had always been active and -- although my lungs had stayed fairly healthy -- by February 2016, I heard my doctor mention a lung transplant for the first time. The day I was told, I was by myself because my parents were working and couldn't accompany me to the appointment. Hearing the words “What do you think about a lung transplant?” was a real eye-opener. My response that day was, “Sure, that's fine.” I tend not to show a lot of emotion. But, inside, I was in turmoil. I knew my lungs were getting worse, but I figured I'd be able to do IV antibiotics and exercise my way back to being healthy.
At age 26, I required oxygen everywhere I went. I did my best to recover lung function so I wouldn't need the oxygen and -- at first -- I was improving. I was doing CrossFit three times a week, going to a gym two days a week, and working as an accountant. But within three to four months, I couldn't walk from my bedroom to the kitchen without gasping for air. The first day I took my oxygen tanks into work was really hard -- both physically and emotionally. I had to walk upstairs so I was out of breath, and seeing my reflection in the computer screen with a nasal cannula while I gasped for more oxygen really sucked! I wanted to quit and go home!
I was lucky that I worked with such great people. They told me to work as much as I could and not overdo it. Continuing to work made me feel like I was still a valuable person.
I became ill in August and spent the rest of my time waiting for my lungs and another kidney from a hospital bed in the ICU. I was on extracorporeal membrane oxygenation (ECMO) for 14 weeks before my transplants. ECMO is similar to a heart-lung bypass machine used in open heart surgery; it allows the lungs and heart to rest. During this time, I had to be very careful and move as little as possible, unless the nursing team was assisting me. With the aid of an army of medical personnel, my surgeon wanted me to walk one mile a day. The nurses, respiratory therapists, nurse practitioners, and doctors gave me the encouragement I needed to continue living. We formed true friendships and we still connect on Facebook.
I received lungs on December 20, 2016 and a kidney the following day. I was finally off ECMO, but I had a tracheostomy and was on a ventilator. Coming off the ventilator was the hardest thing I have ever done. I had needed it for so long that I now felt like it was my best friend. My favorite respiratory therapist called it “tough love” and eventually took away my best friend at that time and opened up a whole new world for me. After three months of weaning, I was finally off the ventilator.
Recovering from my lung and kidney transplants was physically draining, but I had never had such a difficult time emotionally. The first time I saw myself in a mirror, six weeks after surgery, I didn't recognize myself. I looked terrible; I was extremely skinny. I had lost nearly 40 pounds. At first, I was embarrassed to have visitors outside of my immediate family because I didn't look like myself. I'm glad I overcame this because my friends didn't care what I looked like, they were just glad that I was alive and ready to get me back to my old “healthy” self.
I spent the first year after transplant trying to regain strength -- and getting used to being a dialysis patient because my kidney failed soon after transplant. Dialysis three days a week is very tiring but I still manage to work part-time.
Over the years, I have tried not to let CF, multiple transplants, kidney failure, or any other illnesses define who I am. Instead, these are things that have helped shape me into the person I am today.
Facing several different health issues has helped me: learn not to fret the small stuff; be sure to take advantage of every opportunity I have; to not worry what people think about me or my scars; and to be grateful and thankful for everyone and everything in my life.
Despite all of the challenges I have faced, I managed to obtain a BS in accounting, a MBA, and a certificate in computer coding from Georgia Tech. I have also made many new friends and gained new respect for members of the medical field.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Nick was diagnosed with cystic fibrosis at 3 months old. He graduated from Auburn University with a BS in accounting, earned an MBA from Clayton State University, and has earned a certificate in computer science from Georgia Institute of Technology. After
working as an accountant for 6 years, Nick is now working as a software engineer. He has participated in many Great Strides walks and has hosted three golf tournaments to raise money for the Cystic Fibrosis Foundation, Georgia Chapter. Nick lives
in metro Atlanta with his parents and two sisters. You can connect with him on Facebook and Instagram at @npettis24.
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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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