A couple of weeks ago, the living donor care staff at Northwestern Memorial Hospital hosted a support group meeting for the living liver donors who have graced their lives over the past three years. More than a dozen of us showed up, some with stories spanning more than three years, one who was still wearing her hospital ID bracelet from her donation surgery less than one week before, and one brave, brave soul who was due to become a living donor the following week.
At first, I admit, I attended more out of interest in how to provide this kind of support to other living donors. I intended to take notes on the types of issues and needs that the donors brought to the conversation. On the format, what worked, what didn’t. On the pace of conversation, the role of the transplant center staff, etc.
But within minutes, I put my pen down and realized I should be present in that room as the living donor I am, as a participant and not a spectator, as someone who, for all the positive aspects of my donation story, still needs that precious and all-too-rare support from people who can understand what I’ve been through. There were surprisingly few tears (although, a bit of me suspects we would see more if we got to know each other as a group over time) and a lot of laughter. I left the meeting on a high, and on edge, unsettled and in need of more conversation. It was like a hole had been shot out of the wall of a dam, and to this day, I don’t feel yet that it has been plugged.
There are two wonderful networking sites that are aiming to provide an online version of support groups, for the entire transplant community. Transplant Alliance is one; Transplant Cafe is the other. But I left Chicago that week with a sense that nothing can beat in-person gatherings like this one. To all of you who were there, I hope our conversations continue. And Mara, I owe you a phone call! Promise to make it as soon as I’m home from Paris!)
Tomorrow’s blog post: A list of some of the common experiences as opinions we landed on quickly as a group.
Wednesday’s post: A recommendation for centers who are considering launching support groups.