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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
We depend on antibiotics to help us control and get rid of dangerous infections. But, in addition to the near-miraculous power to heal, many antibiotics come with serious side effects, too.
January 30, 2018
Meet Our CFF org Homepage Heroes The Weyandt Family
Life Planning When You or Someone You Love Has CF
“Hello. My name is Brad Dell, and I'm a gambler.” If this were a Gamblers Anonymous meeting, it could be filled with most of the cystic fibrosis community.
In the case of the CF community, we don't pursue the gambling; it pursues us. It's high-stakes risks: livers, kidneys, appetites, hearing, emotional stability, our lives. Instead of poker chips, we stack intravenous (IV) antibiotic bags on a pole. Instead
of throwing the dice, we toss powdered tablets into our mouths.
And, then, we wait -- weeks at a time -- for the dice to land. Will the antibiotics fix problems or cause them? And, just as an antidote for snake venom is more snake venom, antibiotics are often necessary to undo the effects of other drugs. Several times,
I took an antibiotic to treat a Clostridium difficile infection that was caused by taking an antibiotic to treat a different opportunistic infection.
The antibiotic cycle wasn't so harsh when I was younger. I took drugs that caused nausea or dizziness at the worst. The medicines worked like miraculous elixirs, soothing coughs and melting gooey globs of mucus within days. But those tricks grew old and
the bacteria developed better defenses. The Pseudomonas, Achromobacter, and Stenotrophomonas in my lungs were joined by their fiercest
champion: Mycobacterium abscessus (M. abscessus). It was highly resistant to antibiotics, requiring up to four antibiotics and
a minimum 18 months of treatment to suppress. If Pseudomonas and Achromobacter use iron handheld shields, M. abscessus has force fields. I treated it three times (three and a half years of IV and oral antibiotics total) and barely dented it. The long-dreaded
phrase dripped from my doctors' lips: “We're running out of options."
We unleashed an arsenal of additional drugs; all stops pulled. “The big guns,” as my hospital doctors militaristically dubbed them. We were fighting scorched earth tactics with napalm. The results were uncontrollable, and the victories were often Pyrrhic.
“Antibiotic” means “life-killing” when translated from Greek. The antibiotics didn't discriminate between good and bad life; they damaged both the bacteria and my invaded body.
Tygacil (tigecycline) weakened my leg muscles and brought me to my
knees over the toilet bowl for hours as I vomited. Amikacin gave me two new conditions: total deafness and kidney disease. Levaquin (levofloxacin) made me think vortex-dark suicidal thoughts. I moaned for the doctors to take me off, “Anything but
this, anything but this.” The doctors presented more grave lab results and introduced new antibiotics to my caustic cocktail: “Just one more, just one more.”
After 23 years of living with cystic fibrosis, what “got me” in the end was a blood infection in the port-a-cath I used -- ironically -- to deliver antibiotics. My team turned to the most dramatic of strategies in January 2017: my bacteria-ravaged lungs were removed from my chest and replaced with a donor's beautiful, pink, healthy lungs. My old lungs, and their bacteria, probably sit in a jar in a laboratory now; may they rest in pieces.
I spend my days patching up the damage from a lifetime of antibiotics. I've gotten cochlear implants so I can hear again. I'm on fewer medications to allow my scarred kidneys to heal from decades of filtering life-killers. I've been going to the gym and
on hikes to regain the leg muscles I lost. I've been enjoying food without vomiting. I've been seeking therapy to heal the anxiety and trauma that came
with the unwanted side effects.
Despite the damage antibiotics have caused, I recognize I might not have made it to my 20s if it wasn't for them. The side effects can be awful, but the bacteria are even more so. If I didn't have antibiotics backing my immune system in its fight, the
bacteria would have torn right through me.
CF is fought with imperfect weapons, but at least we have those weapons. I might have to fight new infections one day because the steroids I take post-transplant to prevent rejection leave my immune system crippled. This time, the antibiotics will be
the first line of defense. But, my body will be stronger than before. And, hopefully, so will the drugs.
There is a cornucopia of drugs and therapies in the development pipeline right now that have potential to eliminate antibiotic resistance by
halting or piercing bacterial biofilm formation (the “force fields” of bacteria). Things like nitric oxide, Lynovex, and gallium. Funding drug trials are gambles in themselves, but these gambles could save entire generations of CF patients.
Adult with CF
Brad lives in San Jose, Calif. as a freelance writer and editor. He graduated from the University of Hawaii with degrees in history and journalism. When not writing small business profiles and cystic fibrosis awareness pieces, Brad is serving as president of the Northern California Chapter of The Lung Transplant Foundation. He's also hiking and rock climbing to celebrate his recent lung transplant. Follow Brad at his blog, Adamantium Joy, or on his Facebook page.
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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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