Sunday, January 20, 2008

Waiting for Organs

According to the US government, as of 1/14/2008 there are 97,899 people waiting for organ transplants in the United States.

When I was a sophomore I wrote a speech on organ donation. I'm going to represent that speech, but keep in mind, it was much more dramatic when I gave it out loud, instead of in print. Also, remember that I wrote this when I was healthy, before I thought about transplant seriously, before I knew people who have had transplants and before I met the girl my speech was about. This was before I met her when she was dying in the hospital waiting for her second lung transplant.

I still feel just as passionate about becoming a donor, and I am that much closer to needing a transplant of my very own.

Organ Donation:

For her, walking up the stairs to class felt like climbing Everest. Standing in the lunch line once took her breath away, literally. After that her friends bought her lunch. And the prom? Forget it. Can't shop. Can't dance. Can't even flirt. That was before her double lung transplant that replaced her diseased and failing lungs with new ones. And afterward? In January she ran with the Olympic torch.

Sara, a former high school student from Hartford, was born with cystic fibrosis, a genetic disease which along with causing digestion problems, can destroy the lungs. By the time Sara reached high school her lungs had become filled with the sticky mucus caused by the cystic fibrosis, and with every breath she took she could feel the mucus rattle.

Before the transplant Sara would wake up everyday at 5am for her treatments. She inhaled antibiotics and swallowed handfuls of pills before finally turning upside down over a pile of pillows to have a parent pound on her back to help loosen the mucus in her lungs. Altogether, the treatments took up more than two hours of her time each day. Forget trying to live a normal life. No after school activities, no long outings with friends, and definitely no dates.

She said, "Sometimes I'm tired of not being able to take a full breath. I ask my parents what it's like to lead a normal life, to not have to think about each breath."

Sara was on the transplant list for two years; two years when she was so sick she had to spend at least one week each month in the hospital. Sarah spent each day in the hospital with an IV in her arm and every day consisted of at least four hours of more aggressive chest therapy.

Eventually Sara did receive new lungs, but it wasn't easy. Transplant patients have to be in good health, or as healthy as possible to receive the new organ. Even if the patient has the slightest cold the transplant cannot be performed. And it's not like they can just stick the organs in the freezer and wait until the patient is healthier; the organs must be used immediately or they go to waste.

This story had a happy ending, buy many others do not. In December of 1999 there were 73,824 people waiting for organs and two weeks later, 6,125 of those people had died while waiting. And don't think they were just anonymous patients. They were someone's parents, brothers, sisters, children.

Sara was lucky, very lucky.

Now what could I possibly have in common with a transplant recipient, a girl born with a chronic, life threatening disease? The answer? I too, was born with cystic fibrosis.

You've all heard me cough, and many of you have seen me take some of the 45 pills I take each day. Some of you may even be aware of my treatments. The antibiotics I inhale everyday and how my parents turn me upside down over a pile of pillows to loosen the mucus in my lungs.

Other people may get up here to tell you why you should become an organ donor, but I'm here to show you. I live wondering if with the next breath I take I will catch a cold that will land me in the hospital. This is something I have to face everyday for the rest of my life.

But let me ask you, am I really that different from you? The only real difference between you and me is that I know that someday I may need an organ transplant. Any of you may also need a transplant. What if you need a kidney, or your father needs a heart? Would you want to watch someone you love wait for a new organ?

That's what happened to the parents of an eight-year-old boy from Brookfield. Matthew was born with a heart defect and underwent five open-hearty surgeries by the time he was six. It wasn't enough; he needed a new heart. Matthew was on the the transplant list for six months, but died while waiting for his new heart. In the the six months he was on the list only one heart became available and it went to another boy.

Put yourself in his parents' shoes. You have to sit by and watch your son die, maybe in pain, and certainly in fear, because there are no available hearts. If some bereaved parent had taken that minute to see what a great gift their lost child could still give, Matthew could still be alive.

It's very easy to become an organ donor or to donate your children's organs. All it takes is a signature. A sticker and your signature on the back of you driver's license could save a life, or maybe even more than one.

If it's so easy to become a donor, why don't people just do it? Maybe because they don't understand the need for organs and the importance of donating, or maybe it's because of that deep down feeling of immortality. Face it. Do you really believe that you could die at any time and that your organs could be used to save others? I doubt it. Even I, although I know that I have a chronic illness, doubt that I could become very sick, and then just be gone.

But it can happen. To your best friend, my next-door neighbor, to me, or even to you. But if you had to die suddenly, wouldn't it be great to give one last gift?

The greatest gift of all - life.

Think of all the things that can be donated - lungs, heart, liver, kidneys, corneas, and skin. Think of all the lives that could be saved if each of those organs were used.

My best friend Katie got her temps in November and the first thing she did was sign her license and ask where she could get the sticker. When my friend Sarah got her license she too signed the back and stuck the donor sticker on. Because she signed the back of her drivers' license, she can save a life.

I too will be getting my license in a few months. Because of my cystic fibrosis the only organs I can donate are my corneas, but I will be signing the back of my license, in hope that if something suddenly happens to me, I will be able to help someone see again.

Signing that card makes me face the truth, and facing the truth scares me to death. I get shivers thinking that someday someone may cut open my chest, take out my lungs, and replace them with someone else's lungs. But what scares me even more is the thought that I may need that transplant and there will be no one who signed their card to help me.

So if you're hesitating to sign that card, think of Sara, and Matthew, and me. Ours are the lives that may hang in the balance, but remember that someday your life or the life of someone close to you may depend on that person sitting next to you today.

Thank you.

And now, older and wiser, I ask that you not only sign your donor card, but make sure you express your wishes to your family because they ultimately make the decision.

Also, for a true tale of what life is like waiting for a transplant, visit - Nathan is amazing at describing exactly what things are like for his wife Tricia, who is waiting.


MilePost13 said...

Thank you!

izemmom said...

Hi, I found your blog through Confessions of a CF Husband. I was going to post t he same thing you did...about Gwyneth's chances of having a child with cf being 25% no 50/50. I loved your signature, "Dancing 65 ROses" so I clicked and found your blog. I, too, am a Wisconsin girl, and mom to a 2 year old with cf and a 5 y ear old with out.

I just wanted to let you know that I read your blog and will probably keep reading, if that's ok with you. Please feel free to contact me at I don't have a blog except for at, which by the way, is a great site/forum. If you aren't already a member there, please check it out. There are a lot of members your age with cf.

Thanks for your post about organ donation. I am sure it's in my daughter's future.

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