Connecting and Sharing, Not Scaring

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell the story of her journey through the organ transplant process. She posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

I have been connecting with others, both those who are post transplant and those who are waiting. This is my work now, and it feels very right to give back. I had an interesting experience today around this topic in a response to my blog. Someone asked if the mom of a young man waiting for a heart transplant should read it.  I was surprised by the silence in the room. And to be honest, of the 10 people in the room, probably only 4 had ever read the blog, but they all looked at each other and said, “It’s very real.” I laughed. And so it is.

I did answer the reader who was about to refer me to her friend and her son.  I told her when I speak to those actually waiting, I tailor my conversation to what they can hear at the time and don’t scare the bejeasus out of them. At least not until they are ready! No, really, I always go slowly and always emphasize this is my journey, and that their journey will be theirs and likely very different. Every story I hear is different from all others, and that is why connecting with others is so important. Sharing our stories is so powerful because unless you have actually been there, you don’t get it.

So this meeting of 10 people was a Donate Life Northwest Speakers Bureau update. Yup, I’m ready to go back on the circuit. Excited to get out and tell my story again. But my story, at least the “third perspective,” the really personal part, needs to be amended! I need some time to think about how I will tell the story of my transplant experience, some time to plan a video or some such component. Maybe incorporate what I did for the Lifesavers Breakfast video on Second Chances. Some time to say it to about a million people before I can get through it without sobbing uncontrollably. A few tears are okay, even powerful with teens, but not uncontrollable sobbing. That’s embarrassing!

The author is a heart failure patient going through the post-transplant process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Tags: heart transplant, Hypertrophic Cardiomyopathy, organ donation