Twice a month I attend a support group for post-transplant liver patients. I am not much of a support group kind of guy. I never attended any of the pre-transplant workshops. I thought that I was a lot younger and going through a very different situation than most of the people there. And to be honest, I wasn’t as prepared for the surgery and the subsequent recovery than I might have been if I had attended those meetings. And so, on my third week home post-transplant I went to Columbia to attend the support group.
My first impression was not a positive one. During the meeting, several of the patients complained of the hardships facing them. Some had a hard time financially post-transplant while others still had subsequent health issues after their upgrade like diabetes or kidney damage. Still in shock from the surgery and the sudden change in my life, I listened to these stories scared for the future. And yet, I was compelled to go back another time.
The next time I attended the meeting, the topic was completely different, focusing on going back to normal life even when you’re not the same person anymore. This time I was fascinated by the stories, listening intently to these tales of hardship and triumph. During that meeting, I also began to feel as if I was a part of the group, engaging in the conversation and sharing my own stories. Before that, I felt like an intruder, not truly a part of the group yet.
I now look forward to the Thursdays I can attend the meetings. Often you can feel alone in your struggles and triumphs post-transplant. We are all changed, whether we choose to acknowledge it or not. The support-group understands this, knows what it’s like not to sleep, to take twenty pills a day, to schedule your life around doctor appointments. And more than that, they know the miraculous change in strength, mind, and health that I now feel. They have all rallied around me like a second family, giving me helpful advice, looking forward to the twins, and celebrating in our shared gift of life. I might not be a support group guy, but sometimes you just want to go to a place where everyone knows your name.
4 comments:
Thank you for this post. It makes me think differently about support groups in general. I have not been to any groups such as this pre-transplant and that is because on my first day to my transplant clinic a man who was post-transplant was in the lobby/waiting room waiting to greet new patients. I felt very uncomfortable with his approach and immediately turned my attention away while he talked with my wife. I didn't like the way he came up to us and started asking questions about why we were there and then started telling us all about his experience.
I am sure that the clinic means well by having volunteer greeters come in to help the newbies, but just the same I thought it was kind of tacky.
I may have to re-think all of this.
Yanni - good post - keep it up. I'm also a liver recipient, October 2007, and very active in the post transplant advocacy and pre and post patient counseling.
Beaux - The transplant community is very tight and very caring. We look out for one another and take care of one another. This is a big switch from normal life relationships with strangers. Every transplant recipient is not a stranger to one another - we gravitate to one another and share and help. It may take you a few meeting to adjust but give it some time. Those who continue with the support groups tend to do better than those that dont.
Mazel Tov!
Great post Yanai. Even though you're not a support group kind of guy I'm happy for you that you've found this source of support.
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