Chopped Liver - A Community for Live Organ Donors and Recipients

Sunday, February 24, 2008

I've got butterflies...

Hi loyal readers -- I'm back after a long hiatus. And as we work to finalize the Greatest Gift Foundation Web site, I'll be ramping back up on this blog and trying to post three times a week. Once we launch, the blog will move there as a permanent feature of the site. Which gives me butterflies, both figuratively and literally! We hired an outstanding design and brand identity firm, Spyglass, to design our logo and brand, and after viewing hundreds of design sketches and ideas, we landed on one that surprised me but delighted me and everyone in the room and completely fits with our nonprofit's ethos. A simple butterfly, conveniently crafted out of a couple of lower case 'g's. Can't say for sure we're going to run with it as the final, but I suspect we will.


So I had to grin when I first saw the cover today of a new book published in part by UNOS: The Gift that Heals: Stories of hope, renewal, and transformation through organ and tissue donation. Nice little butterfly on the cover! I love the choice of the words "hope," "renewal," and "transformation," too -- all of those came up when we were talking through the butterfly logo concept with Spyglass, and all of them ring so true. I haven't read this book yet but it sounds inspiring. This is from UNOS' news release about the book, which came out in January 2008:

A few years ago, UNOS approached writer and donor dad Reg Green with the idea of writing a book about organ and tissue donation. The recently published book is titled, "The Gift That Heals: Stories of hope, renewal and transformation through organ and tissue donation." What makes this book unique is that it consists of 42 personal stories covering almost every facet of the donation/transplantation process -- the experiences of donor families, living donors, transplant candidates and recipients, donation and transplant professionals. "The goal of this book is to give readers a feel for the wide range of emotions and experiences that are inherent in this fascinating, life-saving procedure," said Walter Graham, executive director of UNOS, who conceived the idea for the book. "At the same time, we want readers to be inspired to support organ and tissue donation -- especially by declaring their intention to be donors themselves."
The book is available through publishing company
AuthorHouse. It is also available through Amazon.com. The price is approximately $13. Electronic copies are available from AuthorHouse for $4.95.

2 Comments:

  • Becky: I am the author of "The Gift that Heals" and am grateful that you are interested in it. Since your website in inspired by living donation I thought you and your readers might like to see a story in the book about a remarkable man who donated a kidney to someone he'd never met.
    For more background on the book, please see our website www.nicholasgreen.org. Best wishes and good luck, Reg Green


    Grateful Husband Donates to Total Stranger

    Dan Tomczak, a retired heavy equipment operator living in Darien Center, New York, steadfastly thinks of himself as an ordinary man. Yet what he wanted to do was so extraordinary in 2000 that the first two hospitals he consulted didn’t know how it could be done.
    Dan put himself in this position because of what at first appeared to be a minor problem with his wife, Ellie’s, health. In 1983 she experienced swelling, especially in her legs. Her doctor advised her to buy elastic stockings and keep her feet up.
    The swelling didn’t go away, however, and she saw a series of doctors before a nephrologist gave her some good and bad news. “Your kidneys are scarred. Eventually you’ll need a transplant. However, that’s a long time ahead. In the meantime, just live a normal life.”
    Not being the kind to panic, this she did for another 15 years, working full-time, for most of those years as a clerk/receptionist at a dairy processing plant. By the end of that time, however, the symptoms had become much more unpleasant. “Every morning before I went to work I would throw up. Driving the 20 minutes home, I’d have to pull over to rest my eyes.”
    It was then she was told by her doctor, “You’re getting close to having to go on dialysis – and we’re putting you on the transplant waiting list.” Only a few months after that and before she started dialysis, she answered the telephone at work. It was from the Erie County Medical Center and a voice said “This is the call.” Characteristically, she stayed at work until the usual 5 o’clock and made sure things were shipshape for her replacement.
    The next day the transplant operation was done without complications and four days later she went home. For years, despite the ups and downs that are not uncommon after a transplant, Ellie says, “It didn’t hold me back from anything I wanted to do.” But in time that changed. The transplanted kidney began to fail and she was put back on the waiting list, eventually getting a second transplant.
    Meanwhile, Dan had come to an important decision. “Before the first transplant, it was very hard for me to go to work and leave her every morning in that state and not be able to do anything about it. When she got back home from work, that just about did her in for the day. I’d have given her one of my kidneys but we’re different blood groups.”
    Now he felt he could do something. Two months after the first transplant he asked Ellie how she would feel if he donated a kidney to a stranger. “If that’s what you want, I’ll support you 100 percent,” she replied.
    That was the easy part. At that time fewer than 50 people had made a non-directed kidney donation. For months, Dan felt hemmed in by the understandable cautiousness of the health authorities. “You only need one kidney,” he kept saying. “Many people are born with only one and never know it. I know there can be complications, but the risks seem low to me and I’m willing to take that chance.”
    To him it was obvious. “I saw what a transplant had done for Ellie. Why not do the same for someone else? I imagined someone out there, probably on dialysis, just waiting. I wanted to get on with it as quickly as possible.”
    Eventually, by going online and contacting other people who were donating a kidney to a family member, he got in touch with Thomas Jefferson University Hospital in Philadelphia. They agreed to do the operation when they found a suitable candidate.
    It was still not cut and dried. One day he answered his cell phone to be told by the hospital, “We’ve got a bad result on your latest blood test. We don’t know if we can use you.” “It was like a knife through my heart,” Dan remembers. The next test was normal, however, and in May 2002 he was called in and a kidney taken out to give to someone he still didn’t know. Three days later he was discharged and says that with one kidney he has never had to forgo anything he wanted to do.
    He was curious about his recipient but, having seen how difficult it had been for Ellie to write a thank you letter to her donor family, he didn’t want to meet him right away. “I knew it would be emotional. I wanted him to become accustomed to his new kidney.”

    In Deerfield Beach, Florida, Michael Stern, a 6-foot, 4-inch salesman, then 53, was saying a fervent thank you. Things had not gone well for him since he left Philadelphia in 1999 to fulfill a 25-year-old dream to move south. Six months later, what at first felt like a sudden onset of flu had put him in the emergency room.
    He felt so ill that when the nurse had finished examining him he could only say, “Please don’t send me back to the waiting room.” “You aren’t going to the waiting room,” she answered and that was the last thing he remembers until he woke up ten weeks later.
    In the meantime, he was told, he’d suffered three strokes. “They paddled me back to life three times,” he says. “But while that was going on, my kidneys went bad. I couldn’t walk. When I got out of bed I fell to the floor.”
    He was put on dialysis and the transplant list. “It was then that I found out you don’t just go out and get a new kidney.” For a man who had always been active and ran every afternoon, struggling along in leg braces and being tied to a machine three days a week was agonizing. His spirits sank lower and lower.
    At the dialysis clinic one day, his arm in a sling from falling down, his cell phone rang with a message. “This is Thomas Jefferson Hospital. I have a kidney for you.” Twice on the way home he stopped the car on the shoulder of I-95 to hit the redial button. “Are you sure?” he asked. “Are you quite sure?” “Quite sure,” said the nurse. “Go home and rest, drink a lot of water and don’t stop on that interstate anymore.”
    A few days later Dan and Michael were on operating tables in adjoining rooms, though they never saw each other. “They told me it was a non-directed altruistic donation. I didn’t know what they were talking about,” Michael says. “When I found out, I couldn’t believe it. I still can’t fathom it. Even the doctors were blown away. ‘This just doesn’t happen,’ they told me. And, do you know, he didn’t want anyone to hear about it? There’s no flash in him at all. He just wanted to be kind to the world.”
    A year later at a ceremony at Thomas Jefferson, Ellie, Dan and Michael met. “I’d imagined a big burly man,” says Michael. “Instead he was small and wiry. ‘I never pictured you like this,’ he told me. ‘And I never pictured you like that,’ I said. But his heart is just as I imagined it. The transplant has totally changed me. I think it’s made me a more understanding person. But Dan just goes on, doing good.”
    Now he has an 8x10 photo of the Tomczaks taped to the wall above his computer. “I want to be able to see them at any time,” he says.
    Dan has changed in one way. He has become convinced that telling his story will help others understand the importance of organ and tissue donation. He now shows the same determination in speaking at meetings and attending donor-card signing events as he did in making his own donation.
    He has done one other thing: at 55, he retired from operating huge construction vehicles to do a two-year course in nursing. Now he works two 12-hour shifts a week at a nearby hospital, more if necessary. One good deed, it appears, however big, is not enough.

    By Blogger reggreen, at 10:33 AM  

  • Welcome back Becky! Its great to see you are back, and that your brother is doing well. Keep up the posting, and we will keep up the reading and supporting. Let me know what I can do for the foundation. I will certainly take a look at this book. Keep in touch...

    By Blogger Ryan, at 10:04 AM  

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