October 31st, 2012
11:50 AM ET
Editor's note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn't know they possessed. Two years ago, we profiled singer Charity Tillemann-Dick, whose lungs were failing due to pulmonary hypertension. But she survived thanks to a double-lung transplant. This week Dr. Sanjay Gupta reports on how this soprano from Denver, Colorado, was facing death a second time because her lungs were failing again. Here, Tillemann-Dick writes about her struggle.
It was the worst of times. I was afraid to go to sleep, fearing the next breath just wouldn’t come if I didn’t force my diaphragm down. The muscle is supposed to work involuntarily, but I think my diaphragm forgot that fact.
I had tubes coming out of my arms, wrists, chest and anywhere else you might be able to fit a tube. My body ached. My head pounded. I was miserable. Still, all I wanted was to live. I wanted to wake up and see my husband. I wanted to sit down at a meal and eat with my family. I wanted to stay up late gossiping with my mother and my sisters. I wanted to go outside and take a walk. I wanted to continue my life-long dream of being an opera singer.
I was waiting at The Cleveland Clinic for a lung transplant. But I wasn't waiting for my first. One year earlier, my body began to reject the first set of transplanted lungs and so I waited behind others, hoping a match would come but knowing it wasn’t a sure thing -– it wasn’t even likely.
In the same ward of the hospital was Ashley Dias. Like me, she had one transplant which, ultimately was rejected by her body. As a 20-something-year-old, Ashley waited, hoping for a match, hoping for her life back. Like, my mother, her mother waited with her in Cleveland, looking forward to the day when they would go back to Boston together.
She had already spent the majority of her life battling Cystic Fibrosis. A transplant gave her a few years of peace. But once again, she was fighting for her life. Her sisters, like mine, were her best friends. Her nurses and doctors adored her. She was an ideal patient. Her community cheered her on, holding fundraisers to help with the enormous costs. Ashley waited at her hospital bed with a sign she made that read, “Lungs, Please Come.”
Our stories were strikingly similar. But there is one important difference. On January 24, 2012, I received a match. Just six months later, Ashley died while waiting for her transplant.
For many, death can be peaceful. But those deaths rarely come when a patient is young, sick and terribly uncomfortable. Those times are also unusual when someone is waiting for a transplant. Because when you’re waiting, no matter how sick you feel, you know that your mortal future is a real possibility.
As sick as you get, the possibility remains as a beacon of hope or a blinding reminder of the indifference of over half of Americans. Because while over 90% of people say they support organ donation, fewer than half of that number sign up to donate.
Today, 18 people will die waiting for a match. Thousands will die this year and 100,000 languish on waiting lists, many unable to perform simple daily tasks. Unlike many crises, we are the missing link between life and death, between hope and sorrow, between music and silence. This one is solvable - and the solution lies with you.
If you don’t sign up to be an organ donor, you are part of the problem – but you don’t have to be. If you are not yet an organ donor, sign up to be one today and you can be part of the solution.
Thanks to someone who made that decision and a family that supported them in it, I am here today. I am alive, I am healthy, I am singing. I can go to my sister’s house for dinner every week. I take my grandmother on outings. I live happily with my husband. I sing all over the world. I realize that there are other people just like me who hope and pray and wish for the same things I am blessed to have every single day. Many of these people die. We can solve this problem, but only if we work together.
Help transform someone’s life from the worst of times to the best and become an organ donor. Make a video stating that you are an organ donor and share it with your friends on Facebook. My life is wonderful right now, but I don’t know why I received a match and Ashley didn’t. What I do know is that what happened to Ashley doesn’t need to happen to someone else. While there are always challenges in life, this is one challenge we can end. Become an organ donor today, so when the worst of times come, you can know the best is just around the corner.
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.