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.
After I received a letter from my transplant donor's mom, I hurried to respond, anxious to learn more about the woman who gave me new lungs and her family.
August 22, 2018
Meeting My Donor’s Family
The Letter From My Donor’s Mom
Yesterday, I shared the letter I received from Angela, the mother of my donor, Samantha. Today, I share my reply to her. Although I planned to mail a handwritten letter after I received Angela's letter, I decided to reply that same day via email. My letter to Angela:
I've imagined writing this letter to you ever since I woke up and found out I had been transplanted. I've been curious about who my donor was, the type of person they were and their interests. I've thought of what I would say and the words I would use to thank them and their family because a simple “Thank You” is not enough. I've had my letter drafted, prepared to send after the 4th of July holiday, when I received yours. I had always wondered if I would hear back from my donor's family. One of my biggest fears about writing is that I wouldn't receive a reply but decided I had to write because they needed to know how their loved one saved me and how grateful I am.
Thank you for telling me about Samantha, I can only imagine how lovely of a girl she was.
Samantha saved my life on June 21, 2016. I received both of her lungs.
I'm 25 years old and was born with a genetic disease called cystic fibrosis that causes sticky mucus to build up in the lungs, causing frequent lung infections. These infections scar the lungs and cause a decline in lung function. I have lived my life as normal as possible despite my disease … attending college, having fun with friends and starting a career. There have been plenty of large speed bumps along the way, but I just moved over them and kept going. I knew transplant was going to be in my future, but was not expecting it for a few more years.
My lungs took a rapid and unexpected turn for the worse in June 2016. I was placed in a medically induced coma on June 13, 2016 with the hope my lungs could rest and work again on their own. I made the doctor promise me that I would wake up again. My lungs completely failed me days later and I was placed on an external heart and lung machine (ECMO), doing all the work for my lungs. My doctors decided the only hope that I would ever wake up again was a transplant. And so, with the help of my parents and older brother, they listed me for a double-lung transplant. Without Samantha's lungs, multiple nurses told me, I would not have made it another night. I was very very sick.
I won't say this last year has been perfect, I was in the hospital for 4.5 months after my transplant and I had to build up the strength to do everyday life things again like walk and hold a fork to eat. But, I have made such great strides and am going to the gym regularly, something I despised before transplant because I would become out of breath. I am back at work part-time after 11 months off -- it is such a great feeling to be contributing to something. I am hanging out with my family and friends who mean so much to me. I have travel plans for this year to visit my brother, Byron, in Boston and my aunt in Colorado. I enjoy doing art and have a new-found interest in taking pictures/videos on my GoPro and creating movies. I have Samantha to thank for this. I want you to know that my body is accepting Samantha's lungs and I have not had any signs of rejection. Her lungs continue to breathe for me.
A day hasn't gone by where I haven't thought about my donor and their family. Now, I finally have a name. I know every day I have here is because of Samantha. I will know that for the rest of my days. I call her my angel looking over me every day.
I want you to know the type of person I am. I could sit here and write what I think of myself, but I wanted you to know from an outside perspective. So, I've asked a couple of my closest friends to write honestly about me. Here is what they said:
“Jackie makes LOVING life look effortless -- because for her, it really is. She's a person who has a true lust for life and all the adventures it brings. She's the person who won't give up when there are obstacles in her way or the odds are against her. She's the person who will, despite everything, find something, some reason to love life and honestly, she's contagious in that way.”
“Jackie's thirst for life is far greater than anyone I've ever known. In the midst of her constant hardships with CF, her optimism shines through as she continues to feel immensely grateful for all of life's gifts. Having had the experience to attend a best friend's reunion vacation with Jackie recently brought an insane surprise amount of joy to all of us. The miracle that she is with us today is one we are forever thankful for. I can't wait to see what life accomplishments are in store for Jackie. She is an absolute warrior, and her strength is inspiring to all. The quote 'keep on keeping on' is one she lives by. And, she does so with a huge heart, and a smile on her face.”
“I met Jackie when I was 12 years old when she was randomly assigned to my soccer team. At first, I thought, 'who is this wild child?' She had so much energy it was almost annoying. I remember the day we became friends. We were hosting a soccer party at my house and all the girls on the team were downstairs -- while the parents were upstairs -- with the exception of Jackie. It felt wrong, so I went upstairs to talk to her and started a friendship that grew into family. Jackie is my only friend brave enough to tell me like it is and kind enough to want the best for me the same way my parents do. She will tell me if a boyfriend is no good, demand I ask for a raise at work because she knows my worth, and refuses to ever let me settle. People like Jackie help the ordinary see all the extra out there in the world. She has taught me to value myself and live every day to the fullest. She may be a control freak, but it's only because she knows exactly what she wants out of life and isn't afraid to go after it.”
I am happy that you wrote you would like to meet, because I also would like to meet you and your family. I want to hear more stories about Samantha and what she liked to do, her big heart, and what seemed like an amazingly kind soul. I am going to ask that they release my personal email address to you so we can continue to communicate that way. Thank you so much for writing, Angela.
Tomorrow, I will share with you my personal experience meeting Samantha's family for the first time.
Adult with CF
Jackie was diagnosed with cystic fibrosis at birth. A native Virginian, Jackie grew up just outside of Washington, D.C. She earned a bachelor's degree in finance from Radford University and went on to start a career in corporate finance upon graduation. Jackie received an emergency double-lung transplant at Inova Fairfax Hospital on June 21, 2016. She spent four and a half months in the cardiovascular intensive care unit, and spent the last year and a half focusing on her health and overcoming obstacles that have come her way. You can follow Jackie on Instagram at @pricelessbreaths, as she raises awareness for cystic fibrosis and transplant and shares her personal journey. You can also find her on her blog, Priceless Breaths.
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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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