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
Since receiving her lung transplant in 2010, Mindy Ladd has been able do the things she loves like tennis, Pilates, and spending time with her friends and family who supported her throughout the transplant and recovery process.
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 you will not have cystic fibrosis in your lungs after the transplant, you will have CF everywhere else. You will need to continue receiving treatment to manage your CF in your other organs. 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. You should expect this to happen at least once. It can happen for many reasons, and it does not necessarily mean that your transplant was unsuccessful or that you did something wrong. Keep in mind that the doctors don't want you to have to stay in the hospital any more than you do. They will require that you stay there only if it is in your best interest.
Follow-Up Visits
You will have to return to the transplant center frequently — possibly every day — 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 before your transplant, 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, CF FamilyCon, and NextBreath — provide the opportunity to connect, share, and learn from peers through open and honest dialogue.
You will need similar support after your transplant. Keep in mind that people with CF 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 their 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, including washing their hands with soap and water or using alcohol-based hand sanitizer, getting a yearly flu vaccination, and avoiding contact with other people 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