UNOS Wall of Names Sun and Tears

On November 12, 2010 I visited UNOS - the national office of the United Network for Organ Sharing in Richmond. After signing copies of "The Match", its executive director Walter Graham gave me a tour of the award winning building. I watched spellbound as organ placement specialists juggled their 3 to 10 cases a day - a kidney running late from the west coast, a heart just clamped with 5 hours to make it by jet to a major medical center. Rows of clocks with various time zones from Maine to Hawaii line the walls of the nerve center.

We left the building into the warm autumn sun that reminded me why I love the South. I touched the stone etched with my husband's name - Joseph at the Wall of Names in the Memorial Garden. A small line of water ran down from the brick, left from the morning sprinklers. It seemed to be a tear.

Warmly,

Susan Whitman-Helfgot
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Simon and Schuster: A Conversation with Susan Whitman Helfgot Part 2

Q. Your mother-in-law, Rachel, endured tremendous hardships, and you describe her as one of the toughest women you’ve ever known. How did her tenacity influence Joseph while he was in and out of hospitals?

A. Joseph’s parents were survivors of Auschwitz, living under the most extreme conditions a human being can endure. Every day they made a conscious choice to stay alive and, somehow, they were able to. Joseph’s mother taught her son -- and taught me, as well -- everything there is to know about hope in the face of terrible odds. Joseph was very brave, and one definition of bravery is finding hope in action.

Q. What would you say to a healthy young person who’s getting a driver’s license and deciding whether or not to be an organ donor?

A. There’s a popular bumper sticker: “Don’t take your organs to heaven. Heaven knows we need them here.” Very few of us ever have an opportunity to save a life, but knowing that your death could save the life of another person is a powerful idea. And knowing that the death of a loved one has brought life to somebody else has provided great solace to many grieving families.

Q&A with Simon & Schuster

Danielle Lynn, Senior Publicist

Susan Whitman-Helfgot
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The Match – AOPO Excerpts Part 4

Excerpt from prepared remarks by Susan Whitman Helfgot at the 2010 National Association of Organ Procurement Organizations recently held in Baltimore, Maryland.

... From a purely medical perspective, we know that the gift of facial tissue upon transplant ceases to be part of the donor and becomes the servant of a new master, directed by the brain which orchestrates its movements, imbuing it with new expressions, a new joie de vivre. Virtually no trace of the donor is left. But to a grieving widow, or to a mother or father, it is almost impossible to explain. So, why then, do donor families step forward and say yes? ....

AOPO's Mission

AOPO represents and serves Organ Procurement Organizations through advocacy, support, and development of activities that will maximize the availability of organs and tissues and enhance the quality, effectiveness, and integrity of the donation process.

As of July 30, 2010, 107,913 people are on the waiting list to receive the Gift of Life.

By: Susan Whitman Helfgot, Author of The Match available in bookstores & online October 12

Susan Whitman-Helfgot
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Hospitals and Having the Conversation about Organ Donation

A young mother wrote me a note. She lost her one month old baby and is sad because no one asked her if her little son could be an organ donor.

This was my reply:

"I know very well how much healing comes with the knowledge that a part of your loved one can continue helping another life to go on. I have never lost a child so it is impossible for me to know the depth of your grief, but I am deeply saddened for you and wish you strength during what is still a very difficult time in your life.

A few comments might help you, though. First, doctors and nurses are not directly involved in conversations about organ donation. This is left to family counselors who are employees of organ banks around the country. Sometimes, due to distance, other ongoing cases in other hospitals and simply a lack of staff, these conversations just never happen as there is no one available to speak to a family.

Sometimes, hospitals do not have the resources to help with organ recovery. Not every hospital participates in organ recovery; this is particularly the case with small hospitals who do not have appropriate staff or resources.

It is also possible that your child's medical condition made it improbable or impossible for him to be a viable organ donor and, rather than start a discussion and "get your hopes up", it was determined not to broach the subject with you and he was disqualified at the outset.

But your letter raises a very important point. So little is known by the general public about the process of organ donation. Not only is it important for us to sign up as organ donors, it is imperative that we communicate this to our primary care physicians and to our families that we have done so. Then, they may advocate strongly for us if the situation ever arises. Their first call should be to the local organ bank, even before calling the rest of the family. Although the hospital should help facilitate this, sometimes they are unable to help. There is no advocate like a family advocate."

Susan Whitman-Helfgot
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Donate Life

The Match author Susan Whitman Helfgot – AOPO Excerpts Part 3

Excerpt from prepared remarks by Susan Whitman Helfgot at the 2010 National Association of Organ Procurement Organizations recently held in Baltimore, Maryland.

... When our ancestors were on the hunt, a quick glance between two humans often spelled the difference between survival and starvation. Our face is the most intimate and precious part of our body; it is the purveyor of the very air we breathe and the nutrients we ingest to survive. And, every face tells a running story to others every moment of every day beyond anything that can ever be achieved with mere words. It follows, then, that donating a loved one’s face is different and will always remain so.

AOPO's Mission

AOPO represents and serves Organ Procurement Organizations through advocacy, support, and development of activities that will maximize the availability of organs and tissues and enhance the quality, effectiveness, and integrity of the donation process.

As of July 30, 2010, 107,913 people are on the waiting list to receive the Gift of Life.

By: Susan Whitman Helfgot, Author of The Match available in bookstores & online October 12

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Modern Miracles & Making Fast Friends

I traveled back from Los Angeles last night with my boys. A flight attendant named Jennie recognized me from Boston Med. We talked and became fast friends. Face transplants are a wonder of modern medicine. My experience with Jennie is a modern miracle of another kind. From a cable channel in San Francisco, she watched a show. A week later, at 35,000 feet and 1500 miles away, somewhere over the Mississippi River, she met me on a plane. We are now fast friends. What a world we live in. Rejoice every day.

Susan Whitman Helfgot