Physical, Logistical, and Emotional Support From Friends and Family
The lung transplant process places unique demands on people who are going through it -- physically, logistically, emotionally, and financially. A person going through the lung transplant process needs to learn, know, and do things that go far beyond the medical situation. And, people considering or going through this process will have to do all of this while trying to maintain their physical health. Although your cystic fibrosis care team, as well as your transplant team, will do all they can to support you during this process, you will also need the close support from the social network that is made up of your family and friends.
Transplant candidates will need help at many points during the process. Because transplant is such a complex process, most transplant centers require that candidates gather the necessary social support to help navigate the transplant process. Different transplant centers may have their own requirements, so it is important to discuss these with your transplant team, including how you will get to and from medical appointments pre-transplant and during transplant recovery.
Transplant candidates may come to rely on family and friends for basic help. Everybody is different, but this could range from transportation to and from medical appointments, to help finding and moving to a residence that is close to the transplant center, if necessary, or shopping for groceries. In addition, if you become unable to make important decisions, it will be important to designate someone you trust to make medical and other important decisions for you. During recovery from the transplant surgery, transplant recipients will be physically reliant on their
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, ResearchCon, and NextBreath -- provide the opportunity to connect, share, and learn from peers through open and honest dialogue.