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.
It's hard not to feel guilt for all those years my partner spent taking care of me as I got more and more sick from cystic fibrosis. This Valentine's Day, I'm not going to dwell on the past. I'm going to focus on how much we love and care for each other right now.
February 12, 2021
My Experience With My Husband’s Lung Transplant
How a Staircase Taught Me to Take Better Care of My CF
Despite the heart-shaped chocolates, red rose buds, and stuffed animals holding their hearts in their hands, this time of year can make me feel overwhelmed with guilt and anxiety instead of feeling the joy associated with loving somebody. I'm reminded of all that my lover has done for me that I can never repay him for -- the years I felt like a burden and couldn't understand why he was sleeping in the hospital beside me.
My partner, Michael, and I have been together for almost 13 years. When we first started dating, I was living a mostly normal life. I was in college and had to be hospitalized about four times a year, but I felt well when I was home. We could go to concerts,
go out with friends, travel, and experience new things together, just like any normal relationship. As time went on, I was hospitalized more and not feeling as well after I returned home. I
had to drop out of college because I was too sick. Over the next decade, I got sicker and sicker, until I got a double-lung and liver transplant the year I turned 30.
And Michael was with me through all of this. Our relationship morphed from one as equal partners to one as caregiver and patient. He was by
my side as new problems came up with my health -- hemoptysis, kidney issues, and reactions to medications. He was by my side as I started sleeping more and contributing less energy to the relationship. He was by my side when I got a feeding tube.
He carried me up the stairs when my legs just wouldn't make it, and he held my hand after surgeries that branded me with new scars.
The feeling of being a burden emerged as a contentious thorn in my side when he started to do things for me that I had previously been able to do myself. I questioned what I was bringing to the relationship. Why would he want to be the one to fetch glasses
of ice water during bouts of retching so bad I couldn't get off the bathroom floor? Why would he try to work from the hospital bed next to me with all the incessant beeping? He's smart and attractive and funny and could get anybody else. Wasn't I
just weighing him down?
These thoughts became heavy, and combined with my chronic depression and physical illness, I was the human equivalent of a muddy puddle on a sidewalk that everybody sidesteps.
But Michael was with me all the way. He'd let me cry without asking questions and would deal with me patiently on the days I wouldn't take my grumpy pants off.
I guess part of me wanted to give him a way out so he could live the life I thought he deserved, instead of the one with the defective girl. He had to work full time, do the cooking, go to the grocery store, and keep up the house, while I tried to get
out of bed and sit in the bath for an hour at a time multiple times a day. It wasn't fair to him -- I was like a child instead of a partner. I felt like he was with me out of obligation -- like maybe he made a Faustian deal with the devil and had to stick it out with me to get something greater in the end.
After my transplants, I started pulling my weight. Our relationship dynamic changed drastically practically overnight. I can unload the dishwasher now and get groceries. I can show him the love he deserves, but it makes my heart ache to think I'll never
be able to make up for everything he did for me. I know my chronic depression makes me feel worse than I should, but I feel so incredibly guilty for that whole decade. I wasn't what he signed up for. The fact that he's still here, despite me surely
being different than what he expected, should show me that he loves me.
He was there and he is here, right by my side, and that says more than my doubting mind could ever writhe its way out of believing. I still feel like I was a burden, and I don't know how that could ever go away. I am, however, more comfortable with it
because I've come to realize that he chose me. He chose to take me on that first date, and he has chosen me every single day since then, just like I've chosen him. I know he loves me. I don't know if he would have picked me if he knew what
the years to come would bring, but that's irrelevant and an unanswerable question.
I've learned that a relationship can't be 50/50 100% of the time. It's a myth that we'll be able to give our best effort every day; especially with physical illness that is out of your control, you can't expect yourself to be in a “normal” relationship.
You have to figure out with your partner the best way to face the abnormal together. Some people won't be able to handle it, but I promise you, some people will.
I'm working hard to assuage the guilt associated with my real or perceived burden-ness. I'm jealous of people in other relationships who haven't had to go through what we have, but then their story isn't nearly as interesting as ours. Like my body, our
relationship has been forever scarred by things from the past, but it's not something to hide or be ashamed about. It's something to point to and say, “Hey, you and I made it through that so we can do anything.”
This Valentine's Day while other couples reminisce about past adventures, I'm going to stop wishing to have lived a different past and remind myself that we've had adventures too, just not ones involving a lot of passport stamps. I'm going to focus on
the fact that we are here today, loving each other and supporting each other, knowing that “in sickness and in health” rings true.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Tara was raised in Austin, Texas, but has lived in Houston since her double-lung and liver transplants on Thanksgiving Day 2017. Her life has changed drastically since she got bangs early last year. She is dedicated to helping the CF community, is on
several committees for the Foundation, and does whatever she can for her local chapter. She lives with her giant-sized dog, Heidi, and her normal-sized partner, Michael. You can follow her antics on Instagram.
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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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