Avoiding Germs
Infection prevention is critical to keeping your lungs healthy. Everyone is exposed to germs, such as
- Washing your hands or using alcohol-based hand sanitizer often.
- Avoiding non-emergency dental procedures, such as tooth removal.
- Avoiding people who have recently had live vaccines, such as those who received nasal flu vaccine or oral polio vaccines.
- Avoiding people who are sick.
- Refraining from sharing straws, eating utensils, razors, towels, or anything else that comes into contact with someone else's mouth, nose, or private parts.
- Avoiding any spoiled or unpasteurized foods.
- Washing fruits and vegetables thoroughly.
In addition to making these lifestyle changes, you will take medication to prevent bacterial, viral, and fungal infections. Check to make sure these medications are covered by insurance.
Cross-Infection Is Still a Risk
People with cystic fibrosis who have undergone a lung transplant still can get and spread dangerous germs to others with CF because germs that were in the old lungs can remain in the upper respiratory system and sinuses. Because of the risk of cross-infection, after transplantation, people with CF should take the same precautions they took before lung transplantation, such as washing hands with soap and water or using an alcohol-based hand sanitizer, getting a flu vaccination each year, and staying at least 6 feet (2 meters) away from others with CF.
Managing Your Health as Your Life Changes
After your transplant and recovery, you may experience changes in your life, such as moving for a new job or a new living situation. Working with a transplant and CF team will remain important for managing your health — no matter where life takes you. Learn about transplant centers across the country, including the one you may be referred to by your CF care team; you can also find care centers across the United States.
In addition, this Mental Health and Lung Transplant handout (disponible en español) may help you learn about ways to cope with the emotional challenges that come following a transplant.
Transplant Rejection
Your body may try to reject your new lungs at any point. Your transplant team will monitor you regularly for this. To reduce the changes of rejection happening, you will take immunosuppressants for the rest of your life.
Every drug has possible side effects. Ask your transplant team about the specific side effects you may experience.
Immunosuppressants increase your chances of developing infections and other complications, including:
- Cancer, including breast cancer, cervical cancer, colon cancer, skin cancer, and post-transplant lymphoproliferative disease (PTLD).
- Diabetes.
- Cataracts and/or glaucoma.
Chronic kidney disease, which in rare cases could result in the need for a kidney transplant.- High
blood pressure . - Tooth decay.
“On November 29, [Lauren] went to the ER of the hospital where she had been continuously treated for more than a decade, spent 36 hours in the ER before being admitted, and was blindsided with a diagnosis, within a day, of stage four terminal metastatic cancer. She died two-and-a-half weeks later. She never went home. She did not have a bowel blockage. She did not have a chance. When asked how she purportedly went from 0 to 100 on the cancer scale without being diagnosed and while otherwise being treated, one of her transplant-related doctors said, ‘She has been on immunosuppressant drugs for almost 10 years and has little ability to fight cancer.’ I was stunned by his comment.” — Gerry Sweeney, father of an adult child with CF, from the CF Community Blog
If you experience organ rejection, your doctor can prescribe medications to counteract the rejection and prevent further complications. If these treatments are unsuccessful, you may be eligible for another lung transplant. If this is a practical option, you will need to go through the evaluation, listing, and waiting processes again.
"Aside from too much weight gain, I need to be conscious of my risk for infection due to my compromised immune system ... I have to avoid raw meat and seafood because of the possibility of cross-contamination. And while sharing food is common across cultures, I stay away from buffets and communal meals." — Jenavese Armstrong, adult with CF, from the CF Community Blog