The Importance of Organ Donation

UNOS 7-27-2015As many of you may know, I battle every single day with a genetic disease called Cystic Fibrosis (CF). I realize many of you may not know what that is or how it affects me and those around me.  I urge you to view a short video (~7 minutes) by a dear friend of mine, Ciara Hillyer, that has more hutzpah than I do and put together a very insightful and educational video and put it on YouTube. I promise it will help you understand more.  https://www.youtube.com/watch?v=SBAquFwYSus

The reason I ask for this is that we’re working towards educating everyone around us on the importance of registering as organ donors. More and more of us CF’ers are living longer and longer lives; this is a good thing but also comes with its own unique challenges. This often ends with us needing to have at some point in our lives a double-lung transplant.  In the face of loss, you can affect the many lives you leave behind in such a dramatic way. It’s not something we enjoy talking about, I get that.  But it’s something we all must talk about with our spouses and loved ones. I myself am an organ donor, as there are organs that are no affected by CF that could prove to change the life of someone that desperately needs it. I do understand that in some cultures this is not religiously accepted, and that’s okay.  But for those of us that can register, I urge you to do so.

Understand that often, even with a double-lung transplant we’re not guaranteed a cure.  We’re basically trading one set of issues (CF) for another (fighting transplant rejection).  There is an amazing documentary that details the life of one extraordinary young lady named Eva Markvoot — she had a double-lung transplant but later succumbed to rejection.  This is part of the risks we take, nothing in life is certain.  If you are interested in watching her documentary and supporting the cause, please visit her site at http://65redroses.com/  — 65 Roses is the moniker used to describe to small children the proper pronunciation of Cys-tic Fi-brosis so it’s something that stuck with her; and Red was her favorite color.  I knew Eva, through webcams/blog posts, etc. and called her a friend.  A truly remarkable young woman who left a definite mark in the world and left us with a task to inform others because knowledge is power.  She is sorely missed.

Thank you all for taking the time to read this, even just that small fraction of your time is so very meaningful to me and to my family — including the millions affected (directly or indirectly) by organ donation.

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