October 31st, 2012
11:50 AM ET

A tale of two transplants

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 possessedTwo 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.

Video: Facebook and organ donation status

soundoff (51 Responses)
  1. jennej

    Charity , I'm glad to hear you are doing so well! In 2011, my 35-year-old husband received a liver transplant after being diagnosed with cholangiocarcinoma. Now, two years later, he is doing wonderfully and remains cancer-free. Organ donation truly is a gift. Not a day goes by that I don't think about the donor's family and their loss. Because that person chose to become an organ donor, my husband will get to live a longer, healthier life. The selflessness, generosity and bravery of the donor and his family astound me every single day.

    I'm signed up to be an organ and tissue donor, and I've made sure to let all my family know of my decision. I hope that within my lifetime, there will be no more deaths due to a lack of available organs, and that there won't be a waiting list of over 116,000 people who are desperately sick and need new organs to live.

    October 31, 2012 at 15:48 | Report abuse | Reply
  2. RobinE

    One thing to consider in looking at the statistics – that 90% of people support organ donation but less than half sign up – is that at least some of those who don't sign up can't donate organs because of their own illnesses or other oddities that disallow them.
    I am an organ donator, but the chances of anyone actually being able to harvest organs from me upon my death are slim. Maybe my eyes.
    I can't even give blood – too many "weird" medical anomalies to be sure it is safe although it probably is.

    October 31, 2012 at 17:35 | Report abuse | Reply
    • IronCelt

      Absolutely. I am in the same situation, with liver disease, heart problems, and eye problems, but other tissues are still usable–tendons, bone, or even skin. It's time to start talking about "Organ & Tissue Donation" instead of just organ donation.

      November 1, 2012 at 16:35 | Report abuse |
  3. Bill Waymire

    I too am a bi-lateral lung transplant. August 6,2009. I had Pulmonary Fibrosis. I was transplanted at age 64. I am an organ donor who is thankful for the donor that gave me life. I was fourth on the list before I was transplanted. I too was afraid to go sleep and mine caried over even after my transplant. I also have Central Sleep Apnea which compounded the problem. I am better now and I can finally sleep through the night. I am healthy again. I am very, very thankful for everything that was done for me.

    October 31, 2012 at 18:25 | Report abuse | Reply
  4. Christine

    It would be great if there was a link for how to sign up to be an organ donor.

    Honestly, it seems ridiculous that you even have to sign up. Once you're dead, it seems that you don't really get to choose what happens to the molecules that make you up. You absorbed them from the Earth. They weren't ever "yours" to begin with. Everything is recycled in one way or another...

    October 31, 2012 at 19:56 | Report abuse | Reply
  5. Margi

    I signed up to donate way back when but have aged out. I still hear younger folks say they're afraid to sign up for fear they won't be cared for if they are injured because one person can save several lives. They are afraid someone will judge them less worthy to live than four or five other people. We need to counteract this with better info.

    October 31, 2012 at 20:14 | Report abuse | Reply
    • Paul Wilson


      November 3, 2012 at 12:34 | Report abuse |
    • Paul Wilson

      I think the Orthodox Jews forbid organ donations -just one of their galling restrictions (10-20,000 rules. I've read them and I can't live that way.) I also wonder if the Jehovah's Witnesses still have a prohibition against organ donations and transplants. If so, one more good reason to not allow them in the house or even on your doorstep.

      November 3, 2012 at 12:38 | Report abuse |
  6. neal

    Everytime that i have to renew my license, i make sure that i check off the box that states if you want to be an organ doner. my wife knows my wishes. I hope that everyone who is healthy enough to please consider in being an organ doner.

    November 1, 2012 at 05:29 | Report abuse | Reply
  7. Lisa

    Please know that LIVING organ donation can be done for many organs. While you are still alive you can donate: a kidney, part of your liver, or part of your lungs. I am a living kidney donor and have noticed any change in my life. It was almost 10 years ago now and although my recipient is no longer with us, I still feel proud that I was able to help. Please check into livingorgandonorsonline.org. It is a wonderful site with lots of people looking for different organs and also a fabulous group of people who have donated and will be happy to help guide you through the process.

    November 1, 2012 at 08:53 | Report abuse | Reply
    • Spiff

      And don't forget bone marrow, which is also donated by living persons: http://www.marrow.org

      November 2, 2012 at 12:39 | Report abuse |
  8. lindaluttrell

    I signed up years ago to be an organ donor. I want to live a long, healthy life...but the thought that someone can benefit by my death, made the process easier to accept.

    November 1, 2012 at 11:15 | Report abuse | Reply
  9. Angelo

    My father received a donated heart in his late 60's after suffering from heart disease for most of his adult life. He lived another 11 wonderful years and was able to know all his grandchildren. The grief that the donor family must have gone through at the loss of their loved one was immense, I'm sure, but the joy that my family experienced as a result of their generosity will live on for generations. All my immediate family members are signed up to be organ donors. If the time presents itself we will be ready.

    November 1, 2012 at 18:08 | Report abuse | Reply
  10. lisa rubinstein

    As the mother of a 14 year old who has had a kidney transplant, I couldn't agree more with you!!!!!!!!

    November 3, 2012 at 16:49 | Report abuse | Reply
  11. H H

    My husband is a kidney/pancreas recipient. A friend is a liver transplant.

    Two families took a moment to look past their own grief, and saved someone else's life. We never forget those donors, or their families. No recipient does. Want to leave a legacy? Be an organ donor.

    November 5, 2012 at 22:27 | Report abuse | Reply
  12. H H

    I've been in the national bone marrow donor registry for almost fifteen years, and everybody close to me knows I'm an organ donor. I donate blood as often as I can because I was blessed with type O negative.

    I'd love to be a face transplant donor. I've seen so many horribly burned people. Give them back some normalcy.

    Take everything. I don' t need it anymore. Don't leave yours behind, either. Want to be remembered? I promise – you will be. My husband is a recipient.

    November 5, 2012 at 22:33 | Report abuse | Reply
  13. Howard Romanoff

    I had a double-lung transplant in August 2011 after 5 years with Pulmonary Fibrosis. It was after 4 "false-alarms, 4 times when they thought they had a match for me but the lungs weren't viable that I received my transplant. Time was running out but I like others, beat the clock. I am thankful to my donor everyday for allowing me this second chance, hard to believe you went through this twice! It's wonderful to see you doing well and well enough to continue to sing!
    Moving the rest of the 90% to action is a matter of creating the awareness, educating and motivating to action.
    I firmly believe most people would sign on, they just haven't done it yet. I speak and write it about it all the time . Maybe it will be something that is read, something that is heard or something that is seen that will motivate the next donor to be a life saver. Wouldn't it be nice to know if you or a family member or friend needed an organ, one would be there for them on a timely basis.
    In response to Paul Wilson, almost all Orthodox Jews do believe in donation, and from what I have learned almost all religions do support transplantation. There are many misconceptions regarding some older beliefs. The Organ Donor professionals can address this and speak to each religion. I wish you well and hope you continue to feel well, sing and talk about the importance of organ donation.

    November 17, 2012 at 20:18 | Report abuse | Reply
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  15. Brad

    How many of you transplant recipients bothered to contact your donor's family????? We are still waiting for my stepmom's recipients to contact us with even a damn thank you... Seems you all are grateful for the "gift" of the organ, but were never taught to send a thank you card for the gift. What do you care now tho right?? Its not like they can take the gift back huh....

    February 14, 2013 at 01:50 | Report abuse | Reply
    • LH

      Brad –

      Recipients do not know where transplants come from unless you have made arrangements or designated a specific person to receive the donation. I recently lost my father and we knew he would want to give life and help to as many people as he could, which he did. We do not expect thank you notes in return. Why would you get a thank you note? It was your mother's gift and choice. You should be ashamed of expecting something that you have no right to receive.

      June 17, 2013 at 16:31 | Report abuse |
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    A detailed family history is established to determine whether the disease might be familial. A history of exposure to drugs such as cocaine, methamphetamine, alcohol leading to cirrhosis, and tobacco leading to emphysema are considered significant. A physical examination is performed to look for typical signs of pulmonary hypertension, .^.:

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