Recovering at Home
It will be vital to your success that you follow the care instructions given to you by your transplant team after transplant. You will have many responsibilities, including but not limited to:
- Caring for your incision
- Attending follow-up appointments at the transplant center
- Participating in physical or occupational therapy exercises
You will not be able to resume normal activities immediately, such as lifting heavy objects or driving, so you will need your family and friends to remain with you to help you. You may be able to work with a home health care agency to get in-home assistance from a medical professional while you recover. Ask your insurance company if home health care is covered under your policy.
Caring for Your CF
Although cystic fibrosis will no longer affect your lungs, you still have cystic fibrosis after transplant. You will need to continue to manage other aspects of cystic fibrosis that may affect you such as sinus disease, gastrointestinal issues, and diabetes. Of course, if anything comes up between visits, contact your CF care team immediately.
Readmissions
It is not uncommon to be readmitted to the hospital after a transplant. It can happen for many reasons, and it does not necessarily mean that your transplant was unsuccessful or that you did something wrong.
Follow-Up Visits
You will have to return to the transplant center frequently for follow-up and therapy appointments immediately after you are discharged from the hospital. These visits may include:
Pulmonary rehabilitation.- Physical therapy.
- Blood tests.
- Pulmonary function tests (
PFTs ). - Chest X-rays.
- Bronchoscopy.
- Lung biopsy1,2
Emotional Support for You and Your Social Support Network
If you'd like to connect with people who have cystic fibrosis or their families, you should ask your transplant team about online support groups or if they could refer you to people who are willing to talk about their experience by phone.
There are aspects of transplant that people don’t understand unless they have been through it themselves. CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. Connecting with a peer mentor provides an opportunity to talk with and learn from someone who is also affected by CF and has gone through similar experiences, such as lung transplant.
Another form of social support from the CF community can be found in virtual conferences and events. Designed by and for adults with cystic fibrosis and their families, community conferences — including BreatheCon and CF FamilyCon — provide the opportunity to connect, share, and learn from peers through open and honest dialogue.
Since germs that were in the old lungs can remain in the upper respiratory system and sinuses, the risk of cross-infection remains even after transplant. People with CF should take the same precautions they took before lung transplantation, including maintaining a 6-foot distance from others with CF.
Ask your transplant center if they know of any support groups that allow you to minimize the risk of cross-infection after your transplant, such as virtual support groups.
REFERENCES
1. Barnes-Jewish Hospital: Lung Transplantation Patient Guide
2. Johns Hopkins: Lung Transplant