Lung transplant may seem a "never me" treatment option for cystic fibrosis. But no matter how diligent you are with your treatment, the unfortunate truth is that there will come a day when your lungs just can’t fight back anymore. Eventually, the damage from a lifetime battle with cystic fibrosis (CF) will be too great, and your lungs will begin to fail. At this point, your health care providers may recommend a lung transplant as a treatment option that could add years to your life.
You’ll be facing a big decision that requires a huge commitment. You’re going to have lots of questions. Find answers to some of them here.
When Is it Time to Consider a Transplant?
Will a Transplant Cure Cystic Fibrosis?
No, not completely. Most transplants in people with cystic fibrosis are bilateral, meaning that both lungs are replaced. The transplanted lungs will not have your genes, so they will not have the CFTR mutation that causes CF. Your new lungs will be able to transport salt and water properly, so they will not have the problems with thick mucus and lung infections that your own lungs had.
You will still have the CFTR mutation in other tissues, such as your pancreas and sinuses. You will still have to take enzymes to help you digest food and prevent malnutrition. You will also continue to be susceptible to sinus and other upper respiratory infections that could spread and infect your new lungs.
Will I Still Have to Take Medications After a Transplant?
Yes. After you have had a transplant, you will take medications for the rest of your life, but they will be different medications than you are used to. Instead of taking medicine to help you breathe, you will be taking several medicines to protect your new lungs and prevent your body from rejecting them.
How Do I Get on the Lung Transplant List?
Once your doctor decides that you need a lung transplant, you will be evaluated by a transplant team. If you meet the criteria, you will be placed on a national waiting list. When a donor becomes available, the organ goes to the first person on the list that is an appropriate match.
How Long Will I Have to Wait for a Transplant Once I Get on the List?
The length of time you will wait for a transplant is impossible to predict. It will be determined by the availability of a donor and by your position on the list. For lung transplants, there are separate waiting lists for adults and children, and each age group has its own set of criteria.
Adults: Waiting list position for people age 12 and older is determined by something called a Lung Allocation Score (LAS). The LAS system, which was created by the United Network for Organ Sharing (UNOS) in 2005, looks at severity of illness and likelihood for survival and assigns a numerical score between 0 and 100. People with higher scores are considered priority recipients and placed at the top of the waiting list. LAS scores are re-evaluated at least every 6 months.
Children under 12: Waiting lists for children under 12 are still on a first-come first-served system. Position on the list is determined solely by length of time in the list.
What Is the Prognosis for Survival After a Transplant?
According to a 2008 report from the Scientific Registry of Transplant Recipients (SRTR), about 80% of all lung transplant recipients are still living one year after transplant and about 50% are still living after 5 years.
Cystic Fibrosis Foundation. Patient Registry 2006 Annual Data Report.2008.
Scientific Registry of Transplant Recipients. “SRTR Analysis” October 2008.
United Network for Organ Sharing.”LAS calculator”. February 2009.