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 lung transplant journey was long and, at times, full of uncertainty. Now that I have new lungs, I want to live my life to the fullest and honor my donor while I do.
January 14, 2020
Trikafta Shattered My Negative Attitude and Expectations
How I Found the Right Mental Health Counselor
In September of 2018, I was starting a new chapter in my life with cystic fibrosis. I was in advanced stage lung disease, on supplemental oxygen 24/7, and managing my mental health. To say it was a difficult time is an understatement. I had no idea, though, that within a few months I would be told by my doctors that they were referring me to be evaluated for a double lung transplant.
I always knew transplant was going to be a part of my future; it was the reason my family and I moved from Kansas to the San Francisco Bay Area. But, no matter how much you prepare, or know what will be coming around the bend, it still hits you like a ton of bricks when you're told without a lung transplant your chance of survival is slim to nonexistent. At 27, I was seeing my friends and peers starting their careers, getting married, and having children and I was just trying to survive.
Going through the transplant evaluation was physically, mentally, and emotionally exhausting. The evaluation consisted of: chest X-rays; CT scans of my lungs, sinuses, and digestive system; endless amounts of bloodwork; an esophagram; SNIFF test; a right-heart catheter procedure; and meeting with a psychiatrist, social worker, the transplant team of doctors, nurse practitioners, and nurse coordinators. Thankfully, I already knew some of the doctors and nurse practitioners on the transplant team because they are also part of my cystic fibrosis care team. It was comforting to see familiar faces in very unfamiliar territory.
By the end of the four-day evaluation, I was depleted and hoped that the transplant team would tell me I was a good candidate for transplantation. I was shocked when they told me I wasn't a good candidate because I was considered “too healthy” to be listed for transplant. What was even crazier was that they were admitting me to the hospital for IV antibiotics because my lung function had dropped.
I was so confused, angry, scared, and tired. I was being told that I was “too healthy” to be listed for transplant, yet I was being admitted to the hospital because I had gotten sicker. I felt as if I was in a dream and just waiting to wake up.
Over the next five months I was deferred for transplant two more times even though I was in end-stage lung disease. I felt as if I was on a train platform waiting for the next train to come but I didn't know when -- or even if -- it would arrive. I was in limbo with no way to get out. It's strange when you're hoping to get sicker so you can ultimately get better.
On December 6, 2018, I was finally in “the window” to be listed for a lung transplant and placed on the United Network for Organ Sharing. When my nurse coordinator called to tell me the news I cried; I was in disbelief. I went through every emotion - excitement, fear, and sadness for my future donor and their family. It hit me full force right then that -- for my life to be saved -- someone else's life would be ending.
Less than 60 days later, while taking a nap, I got the call. At first, I was going to send it straight to voicemail because I was so exhausted, but something told me I needed to answer. On the other end of the line I hear, “We've got the perfect pair of lungs for you. How soon can you get the hospital?” I froze. I didn't know how to respond and in my typical fashion, I laughed and said, “Are you serious?” I wonder if the surgeon had ever heard that kind of response before? After accepting the lungs over the phone, I was scrambling around my apartment trying to figure out what to pack while simultaneously calling my parents, my siblings, and my best friend. I hadn't prepared! I thought I had all this time to figure out what I would pack. I also had wanted to write letters to those closest to me in case I didn't make it.
When I arrived at the hospital, one of the surgeons told me that this would probably be a “dry run” and there was only a 20 percent chance that the surgery would actually happen because my donor was still on life support. For the next seven hours, I waited, slept, and waited some more. It was around midnight that I told my parents I didn't think it was going to happen and that we should go drown our sorrows in pancakes at IHOP when they sent us home from the hospital. It was around 2 am when my nurse came in and announced that surgery was set for 6 am. I looked over at my mom and said, “Well, I guess we aren't going to IHOP anymore.” A few hours later I sent my goodbye texts to my siblings, hugged my parents, and was wheeled back to the operating room.
More than 10 hours later, I woke up in the ICU to the voices of my parents, my siblings (who had flown in from New York City and Baghdad), and my best friend. I was intubated, had six chest tubes, and was hooked up to endless antibiotics, fluids, and monitors. I was in an immense amount of pain, but I could breathe. It was such a strange sensation to take a breath and not immediately start coughing or feel as if I was suffocating.
February 1, 2019, my life was saved by my donor and their beautiful and selfless gift. When I wake up in the morning, I can feel my breath go all the way down to my toes. I send up a silent prayer to my hero, my donor. I can now live a life I only dreamed of having. I want to go back to school, start a career, and live independently. I'm able now to be a better daughter, sister, and friend to those I love. I even decided to start training for the New York City Half Marathon in 2020 with my sister! I keep my donor and their family in my heart every day and will do everything in my power to honor and make them proud.
Adult with CF
Born in St. Louis, Mo. but raised in Wichita, Kan., Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth's health began to decline during her sophomore year of college, causing her
to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog,
Tucker. You can find her chronicling her journey of living, not merely existing on Instagram: saltywoman65.
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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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