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.
Being able to work a full-time career has always been my badge of honor, a way to show that cystic fibrosis does not control -- or limit -- my destiny. Yet, after 37 years of accomplishments, I still feel guilty when I need to miss work for health reasons. Is it possible to have it all when you have CF?
February 20, 2018
How I Balance My 2 Children's Different Needs
CF Can’t Tear Us Apart
My answer to that question is a complicated yes. And, in my experience, only up to a point. You can only balance two balls for so long until -- eventually -- one of them falls.
That's the relationship I have trying to balance my career and cystic fibrosis. Sure, there have been times when I've completely rocked this balancing act for years at a time, but eventually something gives, and I lose that sweet feeling of control that
has helped me cope with this illness.
I've always been a go-getter. Someone who feels the need to prove herself -- not necessarily to others, but to myself. When you've been told at various points in your life that your time here is borrowed and going to college, having a career, getting
married, having children, and leading what most would consider a normal life is not in the cards for you, you either believe what they say, or you decide to prove them wrong. I felt that by pursuing a career, I could demonstrate that I am strong,
I am not worthless, I have purpose here, and this thing called CF does not define me. I have the control!
But, I also enjoy working because I thrive on schedules. It's a tangible way for me to see that I'm doing something with my life. Sticking to a schedule may also be why I excel at taking all my medications, doing my therapies, and making my doctor appointments.
The schedule keeps me on point and has allowed me to balance the demands of a full-time career and a full-time illness, along with all the other things life throws at you daily.
My lips were purple
This defense mechanism of overachieving despite my CF got me through some really difficult times; but when I look back, I realize that it was also the reason why I had those difficult times. I would push myself
to the limit until I just couldn't go anymore and either needed to be hospitalized or had to cut something out of my schedule, or both.
The prospect of calling in sick always made me feel like I was weak. I was terrified of letting people down, and I felt like a quitter. I remember one night when I was working as a waitress, my boss made me leave because my lips were purple, and I was
having a noticeably hard time breathing. Being sent home was a slap in the face because I knew I could no longer cover up my symptoms. I felt defeated that I had no say in the matter; yet it all became very real at that moment. Was serving food to
strangers that important to me? Why did it take someone else saying it to make me realize something was really wrong here? Did my boss care more about my health than I did, or was I just trying to avoid what was really going on?
I neglected that fine balance I was trying to maintain, and my health suffered. I wish I could tell you that was the last time a boss made me go home because I was noticeably struggling. It's apparent now that I lack the willpower to say no when it comes
to work because that feeling of accomplishment I get in return clouds my judgment. For me, the hardest part about having an illness like CF is that it always finds a way to prove me wrong, to make me stop, to make me finally cave and say, “Fine! You
win!” The loss of control is what torments me, yet it drives me to keep striving for more.
Was it worth it?
About six years ago my CF “won” in a big way. My lungs just couldn't take it anymore, and I thankfully received a double-lung transplant.
My recovery went very well, and for once in my life, I felt healthy. This renewed sense of well-being, coupled with my determination to help others, led me to a career as a probation officer.
I had so much energy and was getting more done in a day than I'd ever imagined. I was waking up at 5 a.m., going to the gym, going to work early and staying late, entering climbing competitions (and winning), filling my weekends with adventure, and getting
a good night's sleep. The juggling act was in perfect motion. And, to top it all off, I wasn't canceling, missing, or rescheduling anything. I was actually accumulating sick leave! This precious piece of evidence is what fueled my eagerness and reassured
me that I was doing something I could be proud of.
When I finally felt like I needed a change, I transferred to another department and finally found my niche as an alternative sentencing case manager. About a year and a half later, my lungs began going through chronic rejection. In what felt like a split
second, I was ripped from this dream job into a life supported by ventilators, feeding tubes,
and IV treatments. All the control I had gained, my perfect balancing act, toppled.
I was grateful that I had accumulated so much sick leave, comp time, and vacation time, but within three months I had exhausted it all in the hospital waiting for new lungs. There were times that all I could think about was, “Why didn't you use that vacation
and comp time to go somewhere you'd never been?”
Did I work myself so hard in the last five years that what I brushed off as healthy stress actually wasn't? What is all this hard work for when you're too sick to reap the rewards? Was it -- and is it -- worth it?
After three months of this constant back and forth in my head everything went silent. I welcomed the silence as it's hard to think about your future when it relies solely on the end of another's.
I need to take care of myself
I think I'll always have that internal struggle and dialog with myself. Is working doing more harm than good? Would I be healthier if all I had to do all day was focus on my health regime? It may be
safe to say there's a good chance I'd be more physically healthy but at what cost toward my mental health? No one can answer these questions for me, but it puts my mind at ease that I've grown up enough to be able to ask them. Since my second double-lung
transplant, I have had more ups and downs. Despite telling myself in the hospital that I wouldn't take work so seriously anymore, I found myself asking my doctors three months post-transplant when I could go back to work.
Just a year after this health crisis, I'm back at my job -- only now I work 28 to 32 hours a week. My coworkers, supervisor, and boss are amazing. They are better than me at making sure I'm out of the office after a certain time and support me no matter
what decision I make -- or should I say, my illness makes for me.
As I'm writing this blog I am attached to an IV pole with the hope of reducing the size of an abscess that has collected in my throat. The biggest challenge I face is not letting the stress of missing work stress me out more. Even though I'm 37 and have
been through so much uncertainty with my health, I still haven't learned how not to be so hard on myself.
This overwhelming need to not let CF dictate my life is a way to mask what I'm afraid of realizing: That I do get sick. I do need rest. I need other people to help me, but I also need to take care of myself.
Because when it's all said and done, I want to feel as though I have gotten something out of my life. I want the balancing act to be worth it.
Adult with CF
Samantha, who was diagnosed at age 3, has been living with cystic fibrosis since 1980. Originally from Wisconsin, she has lived in California since 2003. Samantha earned her bachelor’s degree in social science and health with a minor in sociology. She helps adults in the criminal justice system as a case manager for the Alternative Sentencing Program under the Plumas County District Attorney’s Office. A firm believer in exercise, Samantha kept her lungs healthy through her late 20s but at the age of 31 she underwent a double-lung transplant. She went for five years without being hospitalized or needing to rely on portable oxygen, before she developed chronic rejection in the spring of 2016 and had to be hospitalized until she could receive new lungs. On Oct. 11, 2017, she received the gift of life once again and has been doing well ever since. Samantha spends her free time rock climbing, mountain biking, traveling, and volunteering with her local CF chapter. She is also a member of Community Voice and is a mentor for the CF Peer Connect and the Lung Transplant Foundation.
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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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