While the transplant process may often seem like a solo journey, support from those closest to you will make a big difference every step of the way. Support is not only crucial for the person facing transplant, but it is equally important for everyone in the household.
Support takes many forms. There are practical aspects such as assistance in caring for children and pets while you deal with appointments, hospitalizations and the transplant itself. A helping hand while you process all of the life-changing and indeed, live-saving hurdles you are facing. Help with travel arrangements and fund raising (see Finances) can provide some needed relief during hectic times. And let’s not forget the emotional support; people you can talk to, people who understand what you’re going through, people who will let you vent your frustrations.
We were fortunate to have a strong network in our extended families, our church and our community at large. Tapping resources such as our kids’ school communities, our friends, people we knew through our jobs and our family’s church communities was a tremendous means of support. But we often felt awkward and undeserving of their help. Learning to graciously accept help from all corners was an unexpected challenge because there was a desire to be self-sufficient.
This is an area where transplant was quite humbling for us. However, with the benefit of hindsight, we realize that transplant could have been impossible, or at least infinitely more difficult, without the incredible support offered by those that were willing to sacrifice on our behalf. The help was an incredible blessing, before, during and after the surgery.
We also found support in the local CF community; particularly, individuals who had already received their transplanted lungs.
If you don’t have a ready-made support network, you have some options for building one. You can check with both your local CF Center and your Transplant Center. If you have children, they may have networks at school (both students and faculty) that can evolve into your transplant support. If you attend a church, they may be ready and willing to lend a hand of support. If you have a job, people there may want to be involved. CFFC can also help with ideas or contacts.