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.
Getting a double-lung transplant has been a life-changing journey. Along the way, I've had to deal with changes in my mental health and the struggle to keep my survivor guilt in check.
Kadeem D’Shai Morgan
December 4, 2020
Adding Medical Cannabis to My Care Plan
Choosing to Not Pursue Lung Transplant
A second chance, an opportunity to live the life you have been deprived, or trading old problems for new ones. No matter what you call it, no matter what point of view you choose to hold, a transplant is a very taxing ordeal both physically and mentally. There is a reason why national transplant centers set a process to help determine if someone is suitable for this life-changing journey.
Though you must be physically able to undergo every step of the transplant, the other determining factor is to ensure you have the proper support system in place (and if your support system has their own support system). Mental health may even play a bigger role than physical health during the transplant process.
I received my transplant Easter weekend of 2017, after waiting four weeks from signing papers and agreeing to start the process.
So now that I have a new set of lungs and a second chance at life, I should be happy. I am extremely grateful for everyone who helped me achieve 20 years of life, and this God-given opportunity to continue living with the help of a double-lung transplant.
But, there is a question that always lingers: Was it all worth it?
The short answer to that question is yes, it was most definitely worth it. It would be unusual for an individual to reject a second chance to live. My immediate and extended family are more than happy to see me alive and well, as are my closest and dearest
friends. I strongly believe that for every action, there is a justified reaction. In that way, I understand that my new lease on life meant I had debts of some sort to be paid -- tradeoffs for having a second chance at life.
Before my surgery, I never had any problems with my mental health. Anxiety and depression were non-existent
in my life; I was a beacon of confidence and self-pride. It all went downhill after the novelty of getting a new lease on life wore off. At first, the question, “What now?” always plagued my mind. I was at a loss for what my next goals should be.
Before transplant, my biggest goal was to live as long as possible with my failing lungs. Now, my lungs are not as big of a factor in me living and dying, so I was struggling to find purpose in my life post-transplant.
Why have I survived?
To this day I have trouble dealing with survivor's guilt. From Daina to Matt, and not forgetting Claire -- all were lives that CF had taken from the world, lives that I am humbled to have met when I did. Lives that were more deserving of a second, third,
and fourth chance than me, so I truly believe. I know my life matters; I know people want the absolute best for me and are willing to stand by my side to fight any battles I may come across.
The biggest battles I have ever fought are the constant battles with myself, specifically my mental health. I struggle to accept the fact that everything that has led to me being alive today was worth it.
Everyone who has passed away from cystic fibrosis has left a legacy because healthcare providers and other CF patients are able to learn more about how the disease effects the body. Because of these lost battles, we are closer to winning the war.
Sometimes it feels unfair, especially when you lose a loved one from the same illness you have; this is when survivor's guilt impacts my mental health the most. I often cast doubt on why I'm still alive by thinking that my lost loved ones were more deserving.
I'm thinking of Matt, who was on the transplant list for years but, unfortunately, wasn't strong enough to wait any longer for the miracle call. There's also my beloved CF sister, who quickly fell ill and passed away due to meningitis, unrelated to
CF or her transplant.
Sometimes finding joy in a life that was spared is tougher than trying to stay alive while fighting a chronic, genetic disease like cystic fibrosis. The key is to set goals for yourself -- both long-term and short-term. When times seem difficult, keep
yourself occupied and surrounded by loved ones. Most importantly, keep on finding new hobbies and different activities you love doing.
The best way to say thank you, or to show how grateful you are post-transplant, is simply by living and breathing each day. Honor your donor's lungs by continuing to fight to live -- sometimes harder than you have ever fought before.
Live easy. Breathe easy.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Kadeem D’Shai Morgan
Adult with CF
Kadeem was diagnosed with cystic fibrosis when he was 1 year old. Music has kept his spirits strong for 20 years. The love for artistic creation and performance was his getaway from reality. School band ensembles, jazz quartets, African dance accompanied
by Djembe drums, and the love for DJing kept his soul strong when going to battle with CF symptoms and illnesses. After three months of hospitalization three years ago, he was given a new lease on life: He was gifted donor lungs. Kadeem was able to
breathe freely for the first time. He was finally able to start living the life he was meant to pursue. Kadeem aspires to be a music therapist, youth and child social worker, and youth counselor.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails