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.
Because of the gift of one selfless donor, I am celebrating my first year with my new lungs. Even though I spent more than two and a half years on the double-lung transplant list and had a rough year after transplant, breathing easy has made it all worth it.
January 22, 2018
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On Nov. 30, 2016, I received a double-lung transplant from my selfless donor. The past year has been rough, but exciting and full of huge changes. I used to be on an oxygen leash 24/7, nebulized breathing treatments every four hours, and IV antibiotics every three weeks. Now, I am IV-less, rarely cough, and no longer use supplemental oxygen.
My journey started when, at the age of 23, I was unable to get my lung function above 30 percent FEV1. I was told that I needed to be evaluated for transplant. I was devastated and by myself at this clinic appointment. I couldn't believe that I was being told this was my last resort and that my CF was at end stage. I didn't want to come to terms with it, but I finally gave in and did all the necessary testing. On March 12, 2014, at the age of 24, I was put on the double-lung transplant list. I waited a long 973 days, almost two years and eight months, before I got the call.
I went into the transplant center on Nov. 29 (it happened to be Giving Tuesday) with all my family and friends there to celebrate that “we” finally got the call. My friends and family always say that “we” have CF because they feel it emotionally rather than physically. I rolled into the operating room about 30 hours after I received the call. On Nov. 30 at 6 a.m., I was told the lungs were a “go” and I was going to breathe. The surgery was a successful seven hours and 30 minutes.
We were told that my donor had been in a car accident and that the lungs had a couple of punctures in them, but that they were too good to pass up. Those punctures were patched up, scanned, and looked over thoroughly before they were put into my body. Because of this, my recovery was a bit lengthier than it is for most. I had to be re-intubated because my heart wasn't able to handle the stress of breathing on my own. I needed more assistance, which is pretty common right after transplant. They put too big of a tube in, which made my left vocal cord lazy and made it unsafe to swallow for my new lungs. I had to get a nasogastric (NG) tube put in, then they placed a gastro-jejunal (GJ) tube after.
I finally was able to eat real food on day 20. I had chest tubes in for about 30 days until the lung punctures were healed enough and not leaking air. I had a rough time adjusting to the high doses of medications and anxiety was taking over. Thankfully, I was able to get used to those medications. I walked without oxygen and did physical therapy every day. I got through those rough 32 days and moved to the apartment next to the hospital on New Year's Eve, where I had post-transplant clinic every other day for the next few weeks.
Finally, I was able to go home to my kitty and house on Valentine's Day. When I went home, I started pulmonary rehab to help strengthen my lungs and all my muscles. I had experienced atrophy of all my muscles while waiting for the transplant, so I have been working to get them all back. However, a few weeks after returning home, I had a routine X-ray and the doctors discovered I had a pneumothorax, a collapsed lung. My left lung had collapsed, and I had no idea because I was so used to not being able to breathe. I went to the ER and was admitted. Twenty days, another five-hour surgery, and two chest tubes later, I was breathing easy and able to go about my life.
After this whole crazy incident, I started my life again. I went on a hot air balloon ride, went to my first NBA game (a Warriors playoff game), walked the entire Great Strides walk in San Francisco, turned 28 years old, went to Disneyland, and was able to be in my best friend's wedding. Those all have been such amazing moments in my life since transplant, but the best celebration has to be my first “lung-iversary.” My best friends, Kelsey, Callie, Kim, and I went to see my favorite person on Earth, aka Taylor Swift, perform. We had shirts that read, “It's my first lung-iversary” and “Tiff's lung-iversary squad.” On the back it said my hashtag, “Reputation: #TIFFGOTLUNGS.” It was the best night. I had so many people come up and say how happy they were for me and in the process, I was able to raise awareness about CF and organ donation.
The celebration did not end there. A week later, my family and friends threw me a surprise lung-iversary party at our local winery. It was amazing, the place was decked out in pink, Taylor Swift lyrics, Minnie Mouse, my favorite Italian food, and a big pink “1” balloon. It was funny because people were asking, “where's the 1-year-old?” We couldn't help but laugh and tell them about my journey. This was such an amazing surprise and I couldn't help but thank my selfless donor. We said cheers to them and their family and hope that one day we will be able to thank their family in person. I wouldn't be alive had it not been for them checking that box on their license or signing up online. I am eternally grateful for this gift of life and I am happy to say I am breathing easy.
Adult with CF
Tiffany was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016, and has since been recovering and enjoying her second chance at life. A California native, Tiffany enjoys makeup, anything Disney-related, Taylor Swift, and helping the CF community through her YouTube channel LUNGS4TIFF and joint Instagram account @SaltyCysters. Tiffany credits her amazing support system for helping her maintain a positive attitude throughout her struggles with CF, and is very grateful for the life she lives.
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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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