Shortage of donors lowers curtain on life of promise

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dailypress.com

Shortage of donors lowers curtain on life of promise
Wife hopes her husband's story will prompt people to be organ donors.

By Lisa Finneran
February 22, 2008
NEWPORT NEWS


This time, Steven Long didn't make it off the list.

Long, age 45, died earlier this month while waiting for a kidney and liver transplant. He is survived by his wife, Caryn, and their sons, Forest, 3, and Randolph, 1.

It was Steven Long's third time on the transplant list: His body rejected an earlier transplant, and a second successful transplanted kidney failed after five years.

He's one of an estimated 156 Virginians who will die this year waiting for an organ transplant, according to LifeNet Health, which handles organ donations from deceased donors in this part of the state.

"Unfortunately, we see a lot of cases like Steve's," LifeNet spokeswoman Dena Reynolds said. "People die when they are at the top of the list."

Caryn Long hopes that telling her husband's story will reduce that number by inspiring people to register as organ donors.

"It's such a selfless act," she said.

Her husband's story actually starts more than 20 years ago — years before the Newport News couple met — when he contracted an infection that settled in his kidneys. Long didn't know he was sick until he landed in the hospital, and by then his kidneys had completely shut down. He started dialysis right away and was put on the list for a transplant. When the kidneys fail, a patient has two options: a kidney transplant, or dialysis treatments for the rest of his life.

Long received his first kidney transplant in 1986 at the Duke University Medical Center in Durham, N.C. It didn't work.

"He had acute rejection," Caryn Long said. "He was in the hospital for a month, and they had to take it out. He never left the hospital with it."

So he continued with dialysis, using a catheter, or tube, inserted in his belly to fill his abdomen with a special solution that draws extra fluid and waste products out of the blood and then is drained and discarded.

It didn't keep Long, a magician and juggler, from being involved in community theater, and in 1989 while doing pyrotechnics in North Carolina for a production of the musical "The 1940s Radio Hour," he met the actress who would become his wife.

"I thought he was the most gorgeous man I ever saw," Caryn Long said. "Our first kiss was at the director's party."

Six months later, Long visited the fourth-grade class Caryn was teaching and proposed to her in front of her students.

About two years later, the couple was sitting in church when Steven Long's beeper went off: Someone registered as an organ donor had died. A kidney was available for him.

"It wasn't a great match," Long said. "It didn't take right away."

Eventually, his body accepted the organ, and Long was able to live without dialysis for five years before the donor kidney failed.

"Words cannot express how grateful we were," his wife said. "For five years he had freedom; he was able to live a normal life."

They learned that four other patients received organs from that one donor.

When the second donor kidney failed, Long went back on dialysis. But it was too much for him to continue to perform. So he went back to school and studied to be a computer programmer and technical writer, a job he also had to leave in 2002 when it became too much for him. He then went on disability.

Even when he was sick, he was able to play with their two children, Caryn Long said. "He was a good man; he loved his boys," she said. "He was such a good dad, even when he couldn't do anything more than lay on the couch,"

He started getting worse in December 2006. This time his liver was also failing, and doctors put him on the transplant list for a kidney and a liver. During routine exams to prepare him, doctors discovered that Long had blockages in the valves in his heart, which were cleared surgically.

But Steven Long's health continued to decline. He wasn't strong enough to survive the surgery.

That's when Caryn Long told the doctors, "OK, then. We're going to stop."

On Friday, Feb. 1, doctors removed the ventilator, feeding tube and catheter from her husband.

"I told him we'd be OK," Caryn Long said. "Less than an hour later, he was gone. It was raining. Right as he started to slip away the sun came out."

    How to be an organ donor
    Want to sign up to be an organ donor in the event of your death? There are two ways to do it:

    • At the Department of Motor Vehicles: Agree to be a donor when you get or renew your driver's license.

    • Online: Register at http://www.save7lives.org/

    For more information on organ donation or to make a monetary donation, check out the LifeNet Health Web site at http://www.lifenethealth.org

    Donation facts
    • One organ donor can donate up to seven organs — their heart, liver, pancreas, lungs, small intestines and two kidneys — and save up to seven people

    • Donors also can provide tissues — including eyes, bone and skin — to up to 50 patients with conditions that are not life threatening.

    By the numbers
    State
    2,500

    The number of people on the list waiting for an organ transplant

    700

    The number of organ transplants done in 2007

    3

    The number of people who die each week waiting for a transplant.

    UNITED STATES

    100,000

    The number of people on the list waiting for an organ transplant

    29,000

    The number of organ transplants done in 2007

    126

    The number of people who die each day waiting for an organ transplant.

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