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.
When I started coughing up blood, letting my care team know helped me handle it the next time.
February 23, 2018
Why I Decided to Take Time Off From Work
How I Balance My 2 Children's Different Needs
Last year, Dr. David Orenstein wrote a blog post that put hemoptysis in a medical perspective.
In the grand scheme, it doesn't happen often and when it does, it isn't typically dangerous. But there are statistics,
and then there is lived experience. When the Cystic Fibrosis Foundation surveyed people with CF in Community Voice (including me) about their experiences with hemoptysis, the responses varied widely. But when it's happening to you, knowing what hemoptysis could look
like can help you handle it.
For those of us who have experienced it, hemoptysis is gross. It's scary. It might even be embarrassing. But, it can also be a fact of life when you've got cystic fibrosis like I do. The first time I coughed up blood, it was just tinges in my sputum.
It happened when I was starting a new inhaled antibiotic and beginning to use the Vest®. I was just 20 years old and I was scared. My care team was great though, and when I told them what had happened,
they told me to stop using the Vest until my body got used to the antibiotic and then restart. Evidently it was just too much change for my lungs all at once.
Fast forward a few years and I'd just been admitted to the hospital for an exacerbation brought on by a nasty virus my husband and daughter had generously shared with me. I coughed up pinkish mucus, which then became mucus with red streaks. I showed my
respiratory therapist (RT) who reported it to the rest of my care team.
During all of that, my doc came and sat down with my husband and me and had to have a serious talk. He wanted to prepare me for the possibility that coughing up blood was something that could happen again. It was scary to hear that coughing up blood could
be as minor as what I'd just experienced, or as major as spattering blood all over myself and my room and having to be taken by ambulance to the nearest hospital for an embolization. However, the next several times I experienced hemoptysis, he repeated
the same information:
Even though I hated these talks and they really scared me, I'm so thankful for them. When I did cough up a lot of blood at home, splattering the book I was reading, my hands, face, and shirt, I knew what to do.
I grabbed a cup, kept an eye on the clock to measure how quickly I was filling the cup, called my care team, and alerted my husband in case it got worse. I was scared, but I was also prepared.
Hemoptysis can vary so widely from person to person that it's hard to say exactly how it's going to feel or look. You might have pain and know where your bleeding is coming from, or you may not even know you're coughing up blood until you see it in a
tissue or cup. But, that variance is exactly why it's a good idea to have conversations with your care team to know what you should expect and how to be prepared. It might seem like a better idea to just put it out of your mind and not worry if it
hasn't happened to you, but sitting on your fear or playing ostrich isn't going to prevent hemoptysis from happening to you.
Whether it is something you have dealt with, or will deal with in the future, being prepared gives you the power to take control of a situation that can make you feel totally out of control. If that moment ever comes, you can grab hold of your plan instead
of scrambling around in fear.
Your doctor may not bring it up like mine did, but that's okay. You should feel empowered to bring up anything that concerns your health. You can ask questions based on things you've read or heard. You're the one who has to manage this disease all day
every day and that means you need to know about contingencies like coughing up blood, even if it's not something that's ever happened to you. You might consider asking your team:
There are lots of things about CF that aren't pretty or glamorous and coughing up blood is one of them. However, there's no reason to be ashamed of it and you have every reason to be informed. There are a lot of things we still don't know about hemoptysis.
Are there certain drugs, bacteria, environments, activities, or other factors that make it more likely to happen? Does a woman's menstrual cycle make it more likely to happen? Are women with CF more at risk than men?
We don't know the answers to these questions yet, but hopefully more research will bring us answers. In the meantime, work with your care team to make sure you're the best-prepared CF patient that you can be! You deserve it.
Adult with CF
Holly Loughlin is a 38-year-old stay-at-home wife of 18 years to John Allan. Holly also homeschools her daughter Murren, age 15. She works hard to take care of her health so that she can do the things that are important to her. She views her pills and breathing treatments as the tools to help her fly rather than a chain holding her down. The Loughlins are church-planters in Wisconsin, and Holly plays and teaches violin and viola. She loves Jesus, to learn, and to make music and crafts for the people she loves.
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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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