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Organ Donation is Simple Math: Your Agony = Their Joy

Donate Life: Can a heart donor's grief-stricken sister heal her own broken heart

It's simple math: When your loved one is the organ donor, transplant surgery means agony for you, joy for the family on the other side.

Turns out, it's not that simple.

"I'm crying today because I know that on this day, one year ago, a family lost a precious loved one. And, in the midst of their grief they had the strength to give me the gift of life. I don't know who they are but may God bless them for giving me back a life free of pain. A life where I don't have to fight for every breath I take. Their daughter is my angel and I will try to honor her every day of my life."

Lynn Hunter wrote this, about what it means to donate life. Lynn is a Virginia mom in her mid-40s whom I've never met – I've never even talked to her on the phone. I don't think I could bear even to hear her voice. But what she's written has offered the only comfort I have found about the very unique and lonely pain of having your loved one be a heart donor. My family was on the other end. 

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I'm saying this as someone who lost the dearest person on earth to me, my brother, who was an organ donor and a perfect match for everything. He was a great, great connector in life, a bridge between so many disparate people. In death, it turns out, he was as well.

I found Lynn after I first wrote about transplant surgery when the Wall Street Journal asked a powerful question: Was (former vice president) Dick Cheney too old for a heart transplant? Is Dick Cheney Too Old for a Heart Transplant? A Donor's Sister Says That's The Wrong Question

I described the very specific awfulness of watching someone you love die, or not exactly die, but lying in that awful, awful, purgatory required for you to respect their wishes to continue giving life even in death.

It's about standing around the greatest person you've ever known, holding his hand, singing and weeping and aching and staring. You're in a circle around him, holding him and each other, singing and sobbing and refusing to say goodbye while doing just that. And then they tell you it's time, the teams are ready across the country, families of recipients in ICU waiting rooms somewhere else are weeping at their good fortune. Your loss is their new life.

They say 'it's time,' just as your soft song ends, your hands fall apart, disconnect, the circle around him breaks, and they take him away. You cannot breathe. There's no turning off the machines or flat line on the screen or silence. He is taken away, and you are not. You are still there.

When you love a heart donor, your heart is forever broken

A few months later you may get a letter with the purple Gift of Hope insignia. It's from the man who got your brother's heart and he's eternally grateful and so, so sorry and wants to find a way to say something loving to help ease your pain with his gratitude. You want it to work. You may choose to write back or not. You may choose to meet. Or you may sit in your pain and loss and not choose anything at all. Because really, you've had no choices all along and you know that.

I got a letter from the man who received my brother's heart. I got lots of letters, in fact, from people all over the country, teenagers who can run again, someone who is going to college on a full scholarship because some part of him or her was fixed by something of my brother's. I can't read more than the first line or two and then I just fold them all up and stuff them into a box in a drawer I never touch.

I thought I'd be the kind of person who'd want to meet the grateful masses of my brother's gifts. I thought we'd get together on his birthday and celebrate and tell our kids all about it. I thought we'd be some kind of weird family, that I'd feel somehow connected to him through them. I so wish I was that kind of person, able to build that kind of relationship and find some comfort. But I'm not and I can't.

After transplant surgery: A new life

I had no idea what happened on the other end of a transplant, the happy end, until Lynn Hunter wrote to me. Lynn had recently gotten someone's heart. We became Facebook Friends and over the next few months  I quietly watched her life blossom. Now she's this vibrant, funny, super smart, generous wife and mother who, if I met at a PTA meeting, I'd probably end up talking to and meeting for coffee because she's so much fun to be around.

This is weird because Lynn is the first transplant recipient I've ever known. Before her, I found it too painful to even consider the person or people on the other side of the absolute worst day of my family's life. Our loss was such unmitigated agony that it was insulting to me that anyone suggest there was any blessing or silver lining in the fact that he saved so many lives. There was only one life I wanted saved and that was my brother's.

Until Lynn, it never occurred to me that the recipient would have powerful feelings about their donor. Lynn read my piece asking Dick Cheney (who eventually DID receive a heart transplant) how he would live someone's heart. This note she wrote to me opened my eyes and my heart:

"I like your question regarding transplant: "How would you live with it?" Wow! That is the toughest question I've ever been challenged with. I received the most precious gift imaginable from a complete stranger four months ago and this exact question brings me to my knees.

I don't know how to live with it to be completely honest with you. It's almost a burden if I can say that in a way that doesn't come across disrespectful. It's just that you get this amazing gift, and along with it comes the knowledge that your good fortune comes at the expense of so many others. You want to live in a way that honors and acknowledges the gift but you are essentially the same person post transplant as you were pre transplant, except now you can breathe when you walk. Now you can walk your dog, or ride your bike with your child. You can leave the chair in your living room and not worry that your heart will stop before you get to the next room. It's the most joy you can feel but always, always, you are aware of the price that was paid for every little moment of joy you feel. I don't know how to live with it. I just try to live my life in the best way I know how and I pray every day for the family and loved ones of my donor. I don't know why I'm reaching out to you except to say, thank you. Your words touched me today and helped me to put my own feelings regarding this."

Whose heart?

Something about Lynn's gratitude and humility comforted me in ways I am not even fully aware of yet. I just knew I wanted this warm, vibrant mom to have a terrific, full life, and that I was grateful for her gratitude.

Here's what she wrote today. See how she mentions the donor first? That's for all of us out there, whose hearts are still broken. Meet Lynn Hunter. Her heart beats for us all.

"Yesterday was the first anniversary of my donor's death. Today is the first anniversary of my new life. This has been such an amazing year. I rode bikes with my kids for the first time. I roller skated, played all kind of outside games, walked up stairs, got all the way through the mall, walked Gray to school, breathed without pain, didn't worry about my heart suddenly stopping, and the list goes on and on. I am so, so thankful for all I've received this year. For this, I humbly thank God."

Pamela Cytrynbaum teaches at Northwestern University's Medill School of Journalism.

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