On Borrowed Time…
I’ll never forget the day I found out that one of my best friends, my co-author Mitzi Miller, was living on borrowed time. It was right after she, I, and Angela Burt-Murray (the editor-in-chief of Essence) finished a book signing for our novel, The Vow, at Hue-Man Bookstore in Harlem; a woman working on a documentary about organ transplant recipients wanted to interview the three of us for her film, and, all out of nowhere, Mitzi looked right into the camera and told the interviewer that when she’d gotten her liver transplant, her doctors told her the organ would last for about eight years. She was on year number seven.
Of course, I’d known that my friend had had a transplant; when the three of us worked as editors at Honey, Angela and I lorded over Mitzi like she was our child and we her protective mothers forbidding her to partake in risky assignments for her column, imploring her to get the proper rest and nutrition she needed to be well. But I didn’t know her liver had an expiration date that there was a chance I would lose my friend. And so when the documentarian asked me how I felt about Mitzi’s struggle to keep her transplanted liver healthy, I cried. Like, sloppy, ugly cried. No person, let alone my dear friend, should be forced to wonder day in and day out when a part of her body would, quite literally, cease to function when she’d have to go on a mad search for another liver or face an unspeakable illness that could forever change, even end, her life.
This weighs on my mind every time Mitzi tells me she’s not feeling well, for sure. And it’s weighing on my mind this week after Mitzi wrote on her blog, Mitzi Moments, a passionate post about needed changes in the way organs are harvested and shared between regions regulations that lead all-too-many potential recipients endangered. She graciously agreed to let me repost it here on MyBrownBaby. I ask you to read it and, in my friend’s honor, take a moment to advocate on behalf of her and the many sick Americans who are wasting away while they wait for life-saving transplants.
By MITZI MILLER
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 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 1) there are not enough organ donors and 2) organs aren’t shared nationally, only 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.
That regional access system just makes no sense to me. I had no clue. Thank you for making us aware of this. Good luck to you, Mitzi. I just visited your amazing blog and you are hilarious! I am so sorry you had to go through what you did but so grateful you made it through to share your story.
I did it! It took 30 seconds literally. Please let me know if I can do anything else to help.
I am on Mitzi blog almost everyday. I hope that the time she has she spends it being as happy as she can. Organ donation is on great importance and I hope the message gets out there. Great post.
you don't have to ask twice! off to send my letter. thanks for sharing your story and inciting change. all the best to you
I've sent my letter!
Thanks for this post. It was just what I needed to wake me up this morning and get my mind going. This topic is especially close to my heart, because my big sister has three kidneys – the two she was born with and one that she received as a transplant when the original two completely shut down. I pray everyday that her time doesn't run out anytime soon. I'll pray for your time, too…
Thank you for making me aware. I had no idea about the regional system…that is wrong on all accounts. I'm off to send my letter.
Thank you for sharing this story, and making us aware of how the "system" works. I too had no idea that's how things were done. My letter is on its way.
I think I started tearing up way before I even got to Mitzi's post. I don't come here often and I am glad I came tonight. I needed to read this. It's amazing how much we take for granted. Here it is, this young lady doesn't know when her time will be up, yet there is so much BS going on in the world over such frivolous things. I will add you Mitzi and you too Denene to my prayers. And I will donate my 30 seconds today and everyday I remember so that I can do my part to help. Peace, love and blessings.
Wow- I had no idea. I will certainly send my letter. Thank you Mitzi and Denene for sharing and providing insight into a policy that needs to be changed. I will keep Mitzi in my daily prayers.
So glad you posted this. My dad was a kidney transplant recipient, even though his was not successful, it would be so foolish to deny the chance to others. I contacted my representative right away. Thanks for the link.
Wow. Thanks for sharing, making us aware and giving us a way to help!
Love & Smiles,