Thirteen years ago I was diagnosed with auto-immune hepatitis As a result, my liver had completely stopped functioning. Basically, I was told that I needed a liver transplant IMMEDIATELY or I was going to die.
Clearly, I received the transplant.
But those eighteen months I spent waiting for an organ to become available were the hardest minutes, hours, days, and months of my life. And not just because I was unspeakably ill but also because while waiting, I watched fellow patients who had been waiting along with me, die. Yeah, I can't explain what that does for the moral... Not.
But the thing is, once I received the organ I was so busy living and catching up on the years I spent dealing with the liver that I started to forget the scariest details of the ordeal. Like damn near everything. To this day, it takes my mom, medical charts and closest friends to help me remember me of half the craziness that happened... The human mind is so amazing.
All that to say, when I saw the commercial for the premiere of the new season of MTV doc series True Life, True Life: I Need A Transplant, I totally flashed back. And trust, it was not fun. Then, to make matters worse, while doing my monthly blood tests at the hospital last week, my coordinator informed me that things have gotten even worse for liver patients in New York State.
Apparently, nowadays New York State patients experience some of the longest wait times for a liver in the country- 26.9 months. That's more than TWICE the national wait time. Honestly, I just don't know if I would be alive if I would've had to wait almost two and a half YEARS for my transplant. Unfortunately, this increased wait is happening because 10 not even organ donors and 2) organs aren't shared nationally, there's shared regionally. Which means that if an organ becomes available in say California, a patient in New York will never have access.... even if no one is California needs it or is a match.
So you're clear: Over 160 New Yorkers died on the waiting list this past year. Mind you, because of the existing regional system, nearly 1000 viable donor livers are discarded each year at centers with small waiting lists while patients in other regions remain on long wait lists and basically die.
While I'm happy to report that they've recently started lobbying for policy change (there's an important meeting in Atlanta on April 12th that I may attend); we all know how slow that road can be if the regular folks don't get involved. *serious side-eye*
So I'm asking everyone to take a minute out of their day, and contact their representative HERE
Since there's no form letter or petition, I wrote a little something for you to cut and paste:
I know someone who was able to receive the liver transplant necessary to save her life. Unfortunately, because of the existing regional access system and new language in recent guidelines from the government in the Transportation, Housing and Urban Development, and Related Agencies Appropriations Act, 2010, many others will not be as lucky.
As a voting constituent, I'm asking for you to help fight for changes to the system to include broader sharing.
I promise, this will take 30 seconds and very likely save a life. So go on and be my hero today.
*drops mic and walks away*