We don’t like to be called “heroes.” Let’s start there. At a living liver donor support session hosted at Northwestern Memorial Hospital in Chicago a few weeks ago, that was the nearly unanimous opinion expressed by the 18 or so living donors in the room. That opinion culled a strong reaction from one family member who was along for moral support, and from the living conor care coordinator Lori Clark and other support staff in the room. “You all say you don’t want to be called heroes, but you are the very embodiment of the word,” said the family member, if not in those precise words then in something close to it. “I’ve just never heard that before,” Lori said. “It’s really helpful to know that!”
Here are some other nuggets that seemed to be consensus among the donors, if not unanimously shared:
- We wish there were better support after the surgery. We often feel abandoned by the system (a comment I noted was shared by both donors with easy recoveries and donors with more difficult recoveries alike).
- Our gift has a major psychological impact on us. For some, it manifests in chronic depression. For others, in a long-lasting “high” and boost in self-esteem. For some, there is a path that wanders between the two extremes. But there is an impact, and it is profound.
- We wish we knew our medical team better. Having random doctors we’ve never met before pop in on us post-surgery is awkward.
- Food is an issue. We report post-surgical changes in metabolism, in taste for certain items, in appetite, even in allergies. Causation may not be proven, but there seemed to be a lot of common stories in the group.
- Ongoing pain and numbness is also an issue. People reported not being able to sleep on their stomachs or sides, numbness of the scar, abdominal muscle pain after exercise — even those who were three years out.
- We need each other. The experience is alienating and hard to discuss with people who don’t understand what we’ve been through.
There were some individual stories, not necessarily group consensus, that were fun to hear and share. Tales of personality changes (“I suddenly like baseball”), of weird dreams, of memories from our nights in the ICU, of immediate post-recovery bloating and vomiting, of constipation, of our first big “walk” down the hall, of handsome doctors and annoying beeping machines.
It was lovely.