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.
The recent birth of my son brought me news that I never expected -- a diagnosis of cystic fibrosis.
September 16, 2020
My Return to In-Person Clinic Visits
In general, I've never liked surprises.
Whether it is a birthday party; our 3-year-old telling us she caught something, “So cute,” like a mouse or snake; or my wife jumping out from around the corner; I don't like surprises. I prefer to plan for things and -- at least -- pretend to get ready.
I guess I just like to be “in the know” and have a little control.
Our son, J.J., aka John “Solo” -- born May the 4th -- has been full of surprises. After a C-section, J.J. had low blood sugar and needed to be monitored by the neonatal intensive care unit (NICU) at our hospital. Surprise! We had just gone
back to my wife's room for some medication when we got our next surprise -- a phone call asking us to come back down to the NICU. When we got there, the attending physician informed us that J.J. had some bowel distension and needed to be helicoptered
to a different hospital about an hour away. Due to the weather, this actually became an ambulance ride. Surprise! Thanks to COVID-19 visitor precautions,
only one of us could go with him. I left my wife and followed the ambulance.
When I walked in, somewhere between 15 and 20 medical professionals were in Bay 1 attending to our newborn. We didn't know why at the time, but his small intestine had twisted up in utero and necrotized without being detected. Air started filling it and
that's what alerted the nurses to his condition. A surgery was imminent, so my wife checked herself out of the hospital and got a ride to the new location armed with a few bottles of heavy painkillers. They were able to stabilize him and decided to
do the surgery the next morning. We slept as much as we could and waited for the 7 a.m. surgery. J.J. got back around noon, and everything was successful; they reattached the small intestine after removing 80 cm (about 31 inches).
Our next surprise came from the lead surgeon, who reviewed how the procedure went. I remember exactly how he said it, “We cleaned out all of the sticky meconium, and we aren't sure, but this is consistent with cystic fibrosis.” The attending doctor disagreed,
and he shrugged and said he could be wrong, but we'll see. We shrugged it off as well, and our attending told us to wait for the lab results. J.J. spent the next few days getting all of his nutrition through a PICC line.
The hospital was great and kept us in the know every day.
The next surprise was when the extra visitor exception they made for us expired, which meant when we left for the night, only one of us could return the next day. They kept suction attached to J.J.'s stomach to prevent any swelling in the intestines while
he healed, and our next goal was for him to have the first stool of his life. We heard plenty of bowel sounds, but nothing solid came out. We waited … and waited … and waited. On May 11, J.J. vomited all over dad -- green ooze. It had clogged the
suction tube and had been building up in his stomach. I could tell by the nurse's reaction that it wasn't good. I heard a new voice in the hallway shortly after and knew the results of his genetic test were in. I sent a text to my mom and waited.
At least, this surprise was foreshadowed. We got the official diagnosis of cystic fibrosis, the secret of the ooze. The pulmonologist was very nice and helpful, but I still felt sick. It didn't
help that I was still covered in green ooze.
My mom volunteered to watch our toddler that night so I could tell my wife the news and we could process the information -- and process we did. We processed an entire bag of peanut butter cups and a few boxes of Kleenex.
No one in our family had ever been diagnosed with CF for as far back as we could track. We hadn't done any genetic testing -- our oldest didn't have any symptoms -- and we were shocked to hear
many people share that same feeling and experience: surprise, terror, grief, and fear.
We shared the news of J.J. having CF with our friends and family and then got our next surprise. An outpouring of love from places we didn't know existed -- meals, gift cards, messages, letters, videos, books, gas, groceries, babysitters, an apartment
near the hospital -- and more support than I can describe. We got connected to people from our past and people we have never met, and our family took care of us -- no questions asked. This went on for the next 42 days while J.J. recovered in the hospital,
and mom and dad had to rotate days.
Although the world endured closures for COVID-19, we found them to be a blessing. I got to work from home, the hospital, or wherever I could. Everyone had to wash their hands constantly, and we had a great excuse to keep people from visiting! After a
few setbacks that included a blood transfusion, a few days of starvation, and antibiotics, J.J. ended up getting a Broviac line put in his chest for nutrition. This was
our best shot at coming home, but it meant we would be bringing him home with a pump for 18 hours per day, another surprise. After 50 days in the hospital, the final week with a great view of the college football stadium (Go Hawks!), we got to come
J.J. is doing well, all things considered. Big sister can tell people her brother has “65 roses.” We're getting involved, raising awareness, and want to share our story. We know we aren't unique. We know people are living
and thriving and the cystic fibrosis community is wonderful. One of the most helpful things we were told is, “More than anything, this diagnosis is love,” and boy, were they right.
My problem with surprises is that I have no control over the situation. And I'm learning that is OK. Surprises make good stories, provide unique situations, and give you a chance to live life a little differently than you planned.
I'd even argue that surprises give you an opportunity to learn and grow if you can go with the flow and give up some of your control. I still don't like surprises, but I do think they make life exciting and are good for me. They say if you want to hear
God laugh, tell him your plan. I'm betting He'll surprise you. We're looking forward to a lifetime of surprises with J.J. and our family.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Father of a child with CF
Jake’s son, John or “J.J.”, was diagnosed with cystic fibrosis shortly after his birth. Jake, a graduate of the University of Northern Iowa, works full time in senior living and sells residential real estate. A former rugby player, he can still do the
splits when properly motivated. His family fundraises for Great Strides and participates in the Iowa 65 Roses challenge. Jake lives in Davenport, Iowa, with J.J., his wife, Tara, and daughter, Ella. You can reach Jake by email at firstname.lastname@example.org and Facebook.
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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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