Liver transplant recipient (30 years out) wanting to give back. What were your biggest non-medical challenges?
Hi everyone.
I'm a liver transplant recipient. I got my transplant in the late 90s as a kid due to biliary atresia then back in the hospital for 2 weeks because of PTLD due to the donor liver having Epstein-barr virus. There have been challenges along the way, but I've gone on to live a really good, healthy, and athletic life. I still remember how socially isolating those pre and post-transplant years were, especially around school and friends. Those experiences shaped who I am today, and I've come a long way both mentally and physically but it took time and work. For a long time I've wanted to find a way to give back and help others navigate the things I once struggled with.
That's what brings me here. My transplant was almost 30 years ago, and while I talk to my care team and browse this sub, I'd love to hear from the broader community, whether you're a patient or a caregiver.
- What social or emotional challenges did you face? (feeling different from peers, changes to appearance, lifestyle changes, talking about it with friends, dealing with medications, etc.)
- What, if anything, actually helped you get through the pre and post-transplant period?
I'm especially interested in the experiences of kids and young adults (and the parents and caregivers supporting them), but I genuinely welcome perspectives from adults too. Any organ transplant experience is welcome. Thanks so much for reading and for anything you're willing to share.