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.
My wife and I opted for a surrogate to carry our child following her double-lung transplant. After five years of struggling with a bad surrogacy agency, we finally switched providers and found a surrogate who is now carrying our child.
September 2, 2021
What We’ve Learned From Our Grandchild With CF
My Journey to a Second Lung Transplant
“I'm afraid she won't live past age 5. Mom, Dad … it's best you prepare yourselves for the inevitable.”
Imagine hearing those words as a parent from the doctor you trust. My wife Amber's parents heard that terrible prognosis for her cystic fibrosis.
Yesterday, Amber and I heard a different story, “The heart rate is 179 beats per minute. Baby K is on the way.”
Funny how life is full of surprises. We are nine weeks into our surrogate pregnancy, and everything
is looking great. Amber never thought she'd be at this moment. Faith and science have little ways of making dreams come true.
Our surrogacy adventure has not been without trials and tribulations. For most, creating a baby is easy, but for some of us, cystic fibrosis makes it nearly impossible. Yes, you can have a child if you have CF. After a bilateral lung transplant,
having a child is more complicated. In fact, Amber lost a transplant friend, who had her child after the operation. Amber didn't lose her friend during the pregnancy,
but the pregnancy caused elevated hormones that made her friend fight harder to keep her lungs. She lost that battle after a valiant fight for many years.
Naturally, when I talked with Amber about creating a baby, we often remembered her friend. We saw how happy she was to be a mother. Amber wanted this; I wanted this. In fact, we had the go ahead from the Duke University medical staff to proceed but, ultimately,
we weighed creation versus creation and loss -- the possible loss of Amber during the process. It's an issue to consider for any CF patient who has had a bilateral lung transplant. We weren't worried about passing on CF to our child -- both parents have to carry the gene. Our worry, however, was on Amber being there -- to be this child's mother -- after doctors told her she'd never be one.
For Amber to carry a child, a massive number of doctors would need to be involved. Because of the amount of medication she takes, the likelihood of a bad pregnancy or a birth defect --
while not high -- was still higher than the odds we wanted to gamble against. We opted for tubal ligation, but never gave
up hope. We had friends who stepped forward and volunteered to be our surrogate and then canceled at the last minute. Other extremely close friends would say, “I can't be your surrogate because…”
The adventure was frustrating. We cried in each other's arms all the time.
All we wanted was to have a happy, healthy baby. All Amber wanted was to have something normal -- do something normal. It's a struggle she still has today, and I must constantly remind myself to wear her shoes. Still, we never gave up.
Our options to create our family were adoption or surrogacy. We talked about adoption for more than a year and Amber's fear
was rejection, but not of her lungs -- of her child. She feared the child would want to search out who their birth parents were. Seems strange but adding in Amber's experiences of being from a broken family and the rejection she still feels, from
time to time, from some family … coupled with knowing adopted friends who wanted to find their birth parents, we knew adoption was not the route we wanted to choose. Amber also wanted me to have a biological child -- again something we cried together
over daily for many months. At times, she felt like the world was against her -- but little did we know God was forming a plan, guiding us one step at time to having our first child through surrogacy.
For about five years, we were with a surrogacy agency and the experience was beyond horrible. The doctor couldn't remember our names. The agency couldn't locate medical records, and they seemed like they were stringing us along for more money, rejecting
a viable surrogate, and extending the process. In addition to not remembering our names, the doctor couldn't remember that Amber had CF, and the clinic refused to talk to me even though my biological embryo was frozen in their facility. In addition
to this, they made Amber cry each time she had to call them because they would ask standard questions they already had the answers to and said they would require her to have mammograms and physicals before she could carry the child. We would remind
them during each phone call that Amber would not be carrying the child and that we had a surrogate. This fact didn't seem to sink in because they would not proceed until Amber had a full workup and a battery of tests that were “standard for a woman
carrying that intends on being a surrogate.”
We finally left that facility after having our frozen embryos stored there for more than four years. We found another surrogacy agency -- worked with them for seven months -- and now we are nine weeks into our pregnancy.
It's because we held each other close, remained patient, and never wavered from our dream.
We transferred our care to one of the best doctors in the business, have a great surrogacy agency, and have an amazing surrogate who has become part of our family.
Looking back, I can say, “Whew, it's been an adventure!” I like to think there is always a way to accomplish anything. Sometimes it's going to be difficult, other times easier than I thought. For this adventure, having a child became possible with the
belief that the glimmer at the end of the tunnel was bright enough to grab and hold onto. Amber has -- and continues to make -- many sacrifices in her life, and I do the same for her every day. It's important to talk openly. Every couple needs their
partner to be there for them like I am for Amber, and she is for me.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Nicholas is the husband of an amazing woman, Amber. He met his wife on the internet, not knowing she had CF or had gone through a lung transplant. Once he found out, life continued as normal because he understood CF does not define who a person is. Together,
they wish to help people explore what life looks like after a lung transplant.
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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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