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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
To be considered for a lung transplant, you must undergo an extensive evaluation at a transplant center. The process can take several days to several weeks, depending on the center. This evaluation will inform the transplant team about your health, finances, support system, and ability to follow a complex medical regimen.
The evaluation process gives you the opportunity to learn more about transplant from the transplant experts and make a fully informed decision when determining if lung transplantation is right for you.
The transplant team will use the information gathered during the evaluation to determine if having a lung transplant is in your best interest during a transplant evaluation meeting. During this meeting, the transplant committee will determine that you will:
If the transplant evaluation team concludes that you would be a successful candidate for lung transplant, you will need to consider whether you are ready to be listed for transplant. After approval, you can be added to the United Network for Organ Sharing (UNOS) national waiting list to receive donor lungs. Whether your transplant team believes you would have a successful transplant may not be in your control, but you have the ability to make a fully informed decision about when you list if they do.
When the transplant team recommends listing, they are considering factors beyond how sick you are physically, such as the donor availability for your blood type and height, your antibody status, and any issues with your body that might make finding a donor more challenging. If you have concerns about the timing of listing, ask the transplant team and they may help resolve your questions. You may find that there are important factors that they are considering that are specific to transplant medicine.
If you and your CF care team decide that you would like to be referred for a lung transplant, your care team will contact the transplant center and provide your medical records. You will then work with the transplant program to schedule an appointment.
The evaluation process involves many tests and consultations and may take up to several weeks. You will sometimes have to travel to the transplant center and stay nearby until the evaluation is complete.
Like your cystic fibrosis care team, there is a multidisciplinary transplant team. This team of health care professionals is highly trained to support the transplant candidate. During the evaluation, you will meet the members of this transplant team, which may include:
During the evaluation process, the transplant team will review your physical health, psychological health, finances, and any potential factors that might prevent you from having a successful transplant to determine if you are eligible for a lung transplant.
It might feel uncomfortable to have certain aspects of your life and health examined by people you've only just met. But, the evaluation is essential to help the team members learn as much as possible about you so they can ensure that having a lung transplant will not be harmful to you.
At the end of the evaluation, the transplant team will meet to discuss your results and decide whether a lung transplant is appropriate.
You will undergo testing that will help the doctors on the transplant team understand how well your body is functioning. The results of the tests will show how well your lungs, heart, and kidneys work. Other tests will be done to determine what kinds of germs you have in your lungs.
The results of these tests might require further testing, or they might determine that you would not be a good candidate for transplant at their center. Having an untreatable kidney disease is one example of something that might prevent you from moving forward in the transplant process at centers that will not consider multiple organ transplantation.
The transplant process is difficult, not only physically, but also emotionally. The transplant team needs to be sure that you will have the strength and support you need to cope with the challenges that you will face before, during, and after transplant.
For this part of the evaluation, you will meet with a social worker or a psychologist, who will gather information about you, your family, and your support system. Your ability to take medications every day as prescribed and abstain from smoking or illegal drug use will also be evaluated.
The psychological evaluation may result in the transplant team deciding that a transplant is not a good option for you. Having an inadequate support system is an example of something that might prevent you from doing well after a transplant and, therefore, prevent you from being put on the transplant list.
You will meet with a financial coordinator, who will look at your finances, help you understand what your insurance company will cover, and help you plan for how you will pay for the expenses that are not covered. It is important to know that transplant candidates must show the financial coordinator that they can pay their share of the transplant costs and post-transplant care.
If the financial coordinator determines that you have insufficient financial resources to pay for your pre- and post-transplant needs, such as medication co-pays or relocation expenses -- which are not often covered by insurance -- you may not be recommended to move forward in the transplant process.
Learn more about what questions to ask during the financial evaluation.
Mindy Ladd, an adult with cystic fibrosis and double-lung transplant recipient, talks about her experience with the referral and evaluation process, including how she was able to work with her CF care team to find the right transplant team for her.
If your transplant team believes that you would have a successful transplant surgery, they will recommend that you be listed for transplant. The transplant team will contact you when your name is added to the national lung transplant waiting list. Talk to the transplant nurse coordinator at your transplant center if you have any questions about your status on the waiting list.
Watch the webcast below to hear Jordan Dunitz, MD, discuss the lung transplant evaluation process, including:
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