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Deciding to get a lung transplant is a very personal decision and can often times be tough. Below are some general questions that can be used to talk about lung transplantation with your CF care team.1

The information in this section is intended for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your qualified healthcare provider with any questions you may have regarding a medical condition.

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How do I know when it's time for a lung transplant?1

If you develop severe lung disease, your CF care team will discuss lung transplantation as an option for you. In most cases, this conversation will happen long before a transplant is necessary. Your pulmonologist will refer you to a lung transplant center for an evaluation.

How do I choose a lung transplant center?2

Location and experience in CF transplantations will help you decide where to go. Most times, you must live within a certain distance from the center, since donor lungs must be transplanted quickly.

What will my initial visit be like at the lung transplant center?3
You'll talk about a variety of topics at your first visit to help you choose whether or not to move forward:
  • Overall testing process
  • Waiting for a transplant
  • Surgery itself and survival rates
  • Caring for yourself after the transplant

You will have an evaluation if you choose to move forward.

What is evaluated, exactly?3
To find out if you need a lung transplant, the pulmonologist will look at the following things:
  • Overall health
  • Lungs, heart, and kidneys (to find out how well they work)
  • Types of germs in your lungs
  • Mental well-being
  • Your social support system (family and friends)
  • Amount of professional support needed during the transplant
What is the current survival rate?4

Eighty percent of people with CF are alive 1 year after the lung transplant and more than 50% are alive after 3 years.

Does CF go away after I get a lung transplant?5,6

No. Your lungs will not have CF because the donor did not have CF. However, you'd still have CF in your sinuses, pancreas, intestines, sweat glands, and reproductive tract. Your new lungs will not get CF. Some of the drugs you need to take after the transplant weaken the immune system. This makes it hard for your body to fight infections. In some cases, this can lead to lung infection.

Can I just get 1 new lung?7

No. Both CF lungs are infected with germs. If you only get 1 new lung, the other lung will still be infected. People with CF need 2 new lungs.

Will my insurance cover a lung transplant?8

Your CF care team and insurance company can help you figure out if you're covered. In some cases, your insurance company may send you to a certain transplant center. Check with your CF care team about which centers may be good for you. Then talk to your insurance company about coverage.

References: 1. How is a lung transplant initiated? Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/What-to-consider-regarding-a-lung-transplant/How-is-a-Lung-Transplant-Initiated. Accessed May 1, 2016. 2. Getting a referral from your doctor and finding the best center for you. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/Getting-on-the-List/Getting-a-Referral-From-Your-Doctor-and-Finding-the-Best-Center-for-You/. Accessed May 1, 2016. 3. Going through an evaluation. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/Getting-on-the-List/Going-Through-an-Evaluation/. Accessed May 1, 2016. 4. Lung disease & respiratory health center. WebMD website. http://www.webmd.com/lung/lung-transplant-surgery?page=3#2. Accessed May 1, 2016. 5. Life after a lung transplant. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/Surgery-Recovery-and-Life-Post-Transplant/Life-After-a-Lung-Transplant/. Accessed May 1, 2016. 6. Caring for your new lungs. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/Surgery-Recovery-and-Life-Post-Transplant/Caring-for-Your-New-Lungs/. Accessed May 1, 2016. 7. Lung allocation score. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/Waiting-for-the-transplant/Lung-Allocation-Score/. Accessed May 1, 2016. 8. Planning to pay for a transplant. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Lung-Transplantation/Getting-on-the-List/Planning-to-Pay-for-a-Transplant/. Accessed May 1, 2016.

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