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Dear Diary.....

​We're getting personal here!

It's The Season Of Giving And YOU Can Help Save A Life. Why Organ Donation Matters

12/23/2014

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Wow, I can't believe that Christmas is just a couple of short days away. This year has truly flown by! While we're all hoping for the material things on our wish lists, I want to tell you about a dear friend of mine. I will not go into great detail about the scientific mumbo-jumbo surrounding her condition, and I will not mention her name, out of respect for her privacy. I will simply call her Marie in this post. I also have to apologize in advance if my thoughts seem scattered. I am crying as I write this, but I feel that this post NEEDS to be written. If it changes ONE person's mind about becoming an organ donor, I will be absolutely thrilled. 

This year, rather than that fancy new Coach bag or shiny bling, my friend has a much bigger Christmas wish. My friend wants a chance at life. 

You see, I have known Marie since we were about 12 years old. We met in middle school, and the first thing I noticed about this beautiful, shy girl was her warm smile and timid nature. Marie was used to being "different". She was born with a series of serious congenital heart defects, so her life, from birth, has been that of a warrior. She has been fighting to live with every single breath she's ever taken. 

She has had multiple open heart surgeries and procedures, many of which were performed before the medical community even knew how to treat her specific disorder. At the time, doctors didn't know what to do to effectively treat infants and children with serious heart malformations. Marie, in many ways, has helped the medical community learn how to treat other kids, just like her. That, to me, is pretty amazing. 

Of course her life has been full of fear, as well as uncertainty. 

Picture a tiny little girl on an operating room table, putting on her brave face as doctors tried to fix what was "broken". There were no guarantees. Picture her terrified parents in the waiting room, not knowing if their baby would survive these complicated procedures. Back in the 80's, there was a lot of guesswork involved, and by the grace of God, with the help of a skilled medical team, she survived. 

About a year ago, Marie learned that the procedure that literally saved her life many years ago, called a Fontan, has actually been slowly killing her. This procedure helped her heart to operate well enough to keep her alive, but it also increased the pressures in her body, which began to destroy her liver. 

She has now been diagnosed with both congestive heart failure and late stage Cardiac Cirrhosis. This was something that the medical community didn't know would happen with CHD patients who received the Fontan procedure, and they are just now beginning to see the long-term effects for patients like my friend, Marie. She is actually very lucky that these conditions were even caught in time to plan for treatment of any kind. 

So what does this mean for Marie? 

It breaks MY heart to say this, but right now, Marie is getting ready to head out of state to meet with a transplant team at a top medical facility. Yes. In order to survive, she will likely need a new heart and a new liver. Both organs will be needed for her to have hopes for a healthy life. She can't receive  a healthy "new" liver and keep her heart, because then the new liver would inevitably be destroyed, much like her current liver is. 

Pardon my language, but this scares the shit out of me. I hate thinking about the fear my friend and her family are facing, and I hate knowing that while the need for donor organs continues to grow, donations have grown stagnant. I recently looked up some information on organ donation, and what I found was pretty sobering. 
Picture
Image credit: unos.org
Pretty awful to think about, isn't it? SO many peoples' lives can be saved and changed forever through the selfless act of organ donation. Why then, are these organs so difficult to procure for people like Marie, who are in dire need of them? Why is my lifelong friend having to think about the possibility of her own death at the young age of 32? Will she receive the organs she will need to live her life free of illness and disability? Or will her wait simply be too long? 

Choosing to be an organ donor is a big decision. I admit, it can be scary to even think about. Choosing to be a donor means that we are acknowledging out own mortality, and no one wants to think about their own death. I have a HUGE fear of death in general, so I can totally understand why some may be apprehensive. 

But then, when I think of my friend, Marie, I no longer think of organ donation as a scary thing. I view it as a priceless gift....There are countless people out there right now waiting for someone to give them the chance to LIVE. To finally be able to run that marathon...To be able to have a child of their own, or even adopt. To wake up every day and not have to wonder if the time bomb inside their body was going to detonate. These are things everyone deserves to experience. Marie DESERVES this. 

So while you're enjoying the Season of Giving, please consider becoming an organ and tissue donor. This selfless gift can be the difference between life and death for millions in need of healthy organs, including my friend, Marie. 

So this Christmas, my biggest wish isn't for that new DSLR camera I want ever so badly. It's not for anything material. I just want someone I love to have the chance to grow old like most of us will. One day, I hope me and Marie can be crochety old ladies sipping iced tea on a porch swing, knitting doilies and talking about our grandchildren. This Christmas, all I want is for my amazing friend to have a real chance at survival. 

You can learn more about organ and tissue donation at UNOS.org

Are you an organ donor? Why or why not? I'd love to welcome any discussion on this very important topic. There truly needs to be more awareness of how great this need truly is. 

Thanks for listening, and Happy Holidays! 
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