Friday, February 6, 2009

When You Need to Find Someone Who Has Walked in Your Shoes, Where Can You Turn?

As a liver transplant patient, you quickly learn there aren't many of us out there. According to the Organ Procurement and Transplant Network, fewer than 6,500 liver transplants were performed in 2007 (the most recent year for which complete numbers are available), yet as of January 30, 2009 nearly 15,900 people are on the liver transplant waiting list.

So who do you talk to when you're worried, scared or frustrated? Your spouse or friends are probably as alarmed as you; dare you burden them with your unspoken fears about dying? Doctors can give you basic information, but like the title to this blog, there's plenty they can't or don't share. And this experience is so one-of-a-kind, with unexpected and sometimes bizarre "issues," that only another person going through the same thing can relate.

Many transplant centers conduct support groups for their transplant programs. My program does, but because my center is a two-hour drive away (one way), attending support group meetings isn't practical nor feasible. Furthermore, prior to and immediately after my liver transplant, I didn't want to attend a support group meeting because I thought negative stories, if someone shared them, would pre-dispose me to having a negative mindset about my transplant. (In retrospect, that's kind-of ironic.) However, a year after my transplant I was desperate to find someone who had "walked in my shoes." So I began searching.

My solution? Yahoo Groups - or specifically, a Yahoo group for liver transplant patients and their families and friends. Just reading others' posts has given me a far more realistic picture of liver transplants. Some of the members have had amazingly smooth transplants with few complications (What is that like? I wonder); others have gone through unbelievably difficult challenges. Some members died. Many are adults, yet some are parent of children who need transplants and their recounts are heart-wrenching.

Most importantly, they're wearing my shoes, so to speak. And it's a huge relief to have this connection with a group of people who don't judge me; instead, they are sympathetic or, more powerfully, empathetic. The emotional support they provide is priceless.

If you are on your very own liver transplant journey, strongly consider a support group. It's made a positive difference for me and I hope you can find the same. Or sign up for the liver transplant group (you can use the link below).

If you have other recommendations, please leave a comment and tell us about them. Sharing is good karma!
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Photo by Ekaterina Boym-Medler

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