Sharing your story publicly?

[jennybebopper]

I was blessed to be a nondirected kidney donor over 1 year ago now. My recipient and I are scheduled to meet later this week facilitated by the transplant center. They have a couple of ideas on how to "share our story" that day if we feel comfortable. For now I've told them I'd like our reunion to be private, and maybe talk with media later on. They're very respectful about it.

I'd like to know how many donors out there had decisions that were motivated by the media? Or, after donation how much influence has sharing your story influenced other potential donors? I want to advocate for the cause but in my comfort zone...

[PhilHoover]

My advice:

Share your story as little or as much as you feel that you want to share it.

Organ donation is a very wonderful thing...and a very personal thing.....

[Barbara S]

As Phil said, a very personal decision - and do only what you feel comfortable doing!

As for myself, my brother and I felt very fortunate that all went as well as it did, and made the decision to pay it forward and do everything we could to raise organ donor awareness.   We also have a unique situation that we work together in our family business, so it made it much more of a "story"  We were written about in feature article in the local paper.  I wrote an editorial for the local Jewish Newspaper, and the transplant center asked us to make a tape which they played at local dialysis centers, telling the story of living donation.  Then we both became volunteers for the Sharing Network here in NJ.  Thats what we wanted to do - a personal decision.   

You have already given an incredible gift!

[pilotjjc3]

At the time 3 years ago, my recipient and I turned down an offer to put an article in the paper.  I didn't want to draw attention to myself and my buddy didn't want it know he had health problems.  But I do think it helps to raise awareness because I never really paid any attention or really thought about becoming a living donor until my buddy had health problems.  So it can be a good thing to raise awareness.  But like the others said, whatever you are comfortable with.

[ashlee1313]

I agree, share as much as you're comfortable with.  Being a kidney donor/recipient is a very personal thing. 

I've worked in the media for going on 12 years now, so I knew as soon as my employer got wind me being a match for my cousin that they'd have an interest in doing a story.  I guess I'm kind of jaded to it, so I didn't think twice about saying yes as far as my being on TV was concerned.  I made 100% sure that my cousin and the rest of my family were comfortable with it before the initial interview was done.  Because we all agreed we wanted to create awareness of living donors, we all decided to go through with the interviews.  The initial interview was with me and the second interview will feature both my cousin and I. (We're both still in recovery because the surgery was done on April 10, and waiting for the second interview to air.)

[poodles]

There are many ways to publicize Organ Donation, pick the ones that are a good fit for your personality and go with it. You will quickly recognize if you are outside your comfort zone.

You do have control over how your name is used & should be sure as to it's future use.

Share as much as you feel comfortable. Any publicity with your name attached is your story first & foremost. After having a bad experience with the media on a very different matter it was my choice to avoid publicity.

My husband, my recipient was much more forthcoming & was featured in a book about people who had overcome major adversity. I asked that my name be removed and referred to as his wife when what was written did not portray the events accurately. This was excused as editing for a smoother story but I was just way out of my comfort zone.

Your feelings are important and will give you accurate feedback.

This is very exciting! Enjoy your meeting! Please come back & give you a report.