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.
While waiting for another lung transplant, I learned that time is a wicked concept: there is so much of it, but never enough.
Kadeem D’Shai Morgan
August 24, 2021
Why We Chose Surrogacy After My Wife With CF Had a Lung Transplant
NICU Advice From a Mom of a Newborn With CF
When your back is against the wall and there is nothing you can do except to hope and pray for a miracle, you enter a psychedelic state of mind. You become at peace with the inevitable. You begin to cherish and reminisce about every moment in your life
that leads to this very instance.
In October 2020, I began to say my goodbyes to all my loved ones for the last time.
The pandemic was still pretty new to everyone; no one knew how it would impact people with CF and transplant patients like me. At the end of May 2020, I had gone to the emergency
room because I wasn't feeling well at all -- fatigue, lack of appetite, and little sleep. Not long after getting triaged my vitals started tanking -- my heart rate became very rapid and my breathing became very labored. The nurse set me up with some
oxygen but, still, my stats were not getting any better. So, the on-call doctor admitted me and sent me to a general ward to be looked after.
I wasn't even on the general ward for one full day when my nurse realized that I should be admitted into the major surgery intensive care unit (MSICU) because I couldn't eat or do basic things without running out of breath, even with high-flow oxygen.
Upon arriving at the MSICU the head surgeon immediately put in the order for me to be intubated, to relieve stress off of my body and my lungs. The fear was that I had become sick from COVID-19, so the surgeons kept testing me hourly while treating
me with broad-spectrum antibiotics, hoping that it would improve my health status.
After a few days of being intubated my health improved. I was then moved to the step-down unit to further my antibiotic treatment. I then underwent plasmapheresis (removing
and replacing blood plasma) treatment and was back at home two weeks later.
The doctors concluded that organ rejection was the culprit. Though my symptoms had ceased, the damage that rejection does to an organ is irreversible. This was the catalyst of what was to come a couple of months later.
In mid-September 2020 I woke up one morning with severe shortness of breath, almost gasping for air. After 10 minutes of struggling to catch my breath, my younger brother called an ambulance for me. I arrived at the hospital and was stabilized with high-flow
oxygen, and my doctors told me it was time to start doing another workup to be listed on the transplant list once again.
This news was devastating but understandable. I was not scared for my own sake; I was scared to tell my family, my friends, my loved ones. I felt like I failed them. To process this, I met with a spiritual advisor. This was a game-changer for me because
he made a huge impact on my life moving forward.
Weeks went by with me being in the hospital and trying to get considered for the transplant list. By mid-October, things took a turn for the worst.
My vitals tanked once again, while being fed 10+ liters of oxygen -- and my lungs were not absorbing any of it. The on-call doctor ordered emergency intubation and transferred me to the MSICU, where I would stay for the next three months. The doctors
decided not to proceed with any transplant workups because they believed that I wasn't strong enough to withstand surgery, let alone survive the possible wait time to receive a transplant.
At this point in my life, all they asked was, “How can we make you comfortable?” I watched enough movies and TV shows to realize that was code for “we cannot do anything more for you.”
This was the first time I've seen my father cry in front of me and the first time my brother cried in front of me while holding my hand sitting at my bedside -- we all felt the same feelings, but I was not sad or distraught. I was eerily at peace. I knew
what was ahead, based on what the doctors were saying. The one thing I was afraid of was that the people closest to me did not know how much I truly loved them. Time is a wicked concept; there is so much of it, but never enough.
By a stroke of luck, a new surgeon was placed on the MSICU floor and looked at my file. He ordered a physical test for me as a high priority. The physiotherapist came in and moved all of my machines and told me to
stand up for as long as possible. I contested as much as I could while being intubated and wired up. But, he was persistent, and I knew deep down I had to trust him. After being bedridden for a couple of months with no leg movement whatsoever, I was
able to stand with some aid for a total of 56 seconds. I felt so sick to my stomach that I ended up vomiting and passing out. After seeing the results, the surgeon ordered consistent physiotherapy for me. The goal was to reevaluate my prognosis. After
more than a month of being intubated, the doctors felt safe to extubate me and put me on prolonged cardiac and respiratory support.
With constant physical therapy, I made the transplant list on the Dec. 9. My first call was on my birthday, Dec. 17, but it was a false alarm. My second call was received on Dec. 25 -- this was the real deal! A month and two weeks later I was back home
with my family.
It's amazing what a full 12 months can bring you. I learned that time is everything, but there is never enough. If you love someone, let them know every chance you get, and do not miss a beat. Find love in its purest form; your heart will recognize it.
Life is nothing to take for granted. It's a short gift that must be cherished to the fullest.
Love the life you live, live the life you love. 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.
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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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