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.
Halloween, April Fools' Day, and Mother's Day may be average American holidays for most, but for me, they mark three important days in my long, emotional journey toward a new pair of lungs.
July 20, 2017
Finding My Truth in Acting
How I Came to Love My Scars, My Body, and Myself
It was about 1:12 a.m. on Halloween when my phone rang. I couldn't believe it. It was THE call … the call that meant my long wait on the lung transplantation list was finally coming to an end. As soon as I got off the phone, I busted into my sister Laima's room and woke her up. After four sleepless hours, we made our way to the hospital and the nurses did their beginning assessment. Then, people started coming in left and right for blood work, X-rays, and other tests.
Hunger, nerves, and a lack of sleep had started to get to me, and I was getting annoyed with the seemingly endless wait for my new lungs. After 19 hours, I was finally wheeled down to pre-op, and then it was time to go into the operating room (OR). I gave my sister a few hugs and said a few last words, and was wheeled away toward my shiny new air bags. “This is it. The wait is over,” I thought as they put the oxygen mask on my face. As they told me to breathe in deeply, I crossed my fingers and tried to stay awake as long as I could before the anesthesia kicked in and knocked me out.
I woke up slowly -- groggy and uncomfortable as the breathing tube was pulled out. Although I still had anesthesia in my system and couldn't keep my eyes open, I had enough sense to choke out the question, “Did I get my new lungs?” “No,” they said. My heart immediately sank.
Once I was brought into the recovery area, my OR nurse came to talk to me. As soon as she gave me a hug to say how sorry she was that the lungs didn't happen, I fell apart. When I saw Laima in the intensive care unit (ICU) the next morning, I started crying again as she hugged me. We were both sad that the donor lungs didn't work out. After I was able to leave the next day, we were still heartbroken, but decided that we couldn't be upset any longer and had to move on. Onto the next one, whenever that would be!
Life returned to normal until April Fools' Day. My sister and I were having a picnic by the Mississippi River, when my phone rang with a strange area code. It was the call. Again.
We made our way to the hospital where we were met with a flurry of nurses and technicians who started blood work, tests, and X-rays. Then, there was a lull. We decided this time that we wouldn't tell as many people or share on social media until we knew the lungs were a definite.
As I was about to take my second shower with the disinfecting soap, my nurse came in and told me that the surgery was canceled. Was this some sort of sick April Fools' joke? Once again, the news broke my heart. But after last time, I had put up some armor and tampered my expectations just in case it was another dry run.
Then, about two months ago, I was doing my evening vest and nebulizer treatments when my phone started ringing. It was after 9 p.m. and a 612 area code, so I knew who was calling. I had already had two dry runs, so I knew there was always the possibility of a third. This time, however, it was a low-risk donor who was not on life support, so all we could do was keep hoping that the third time would be the charm. The next day, I found myself back in the hospital being wheeled toward the OR and being put to sleep, once again.
This time, I woke up groggy and half-asleep, but with the breathing tube still in, a heavy feeling in my chest, and wires everywhere. I smiled inside, because I knew what they meant: I had finally received my new lungs. What a wonderful Mother's Day gift to my mom. (That's right … I got my transplant on Mother's Day. Life has a sense of humor, I guess!)
Growing up with CF, I've learned to always be ready for a plan B, and my lung transplantation experience was no exception. For those with CF who are on the transplant waiting list, my advice to you is to always be prepared and know that anything can happen. Be ready for the possibility of a dry run (or several dry runs), and don't be afraid to second guess when it comes to your own CF care.
Adult with CF
Rima was diagnosed with cystic fibrosis around 4 months old. A graduate of Franklin Pierce University, she earned her bachelor's degree in environmental science. She is currently unable to work, so she is focusing on health full time. She received a double-lung transplant at the University of Minnesota Health in Minneapolis in May of 2017 and plans to move back to Colorado soon. Follow Rima and her sister, Laima, as they spread awareness about CF on Instagram at lung_story_short or on their blog, Lung Story Short. You can also follow Rima's personal Instagram account, rimasaurusrex.
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