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Organ recipient headed for the 2002 Transplant Games

Nearly 80,000 men, women and children in the United States are waiting for an organ transplant. Of those, 1,800 live in the Pacific Northwest. Although many people need a transplant few actually survive the wait. About 16 people die every day awaiting an organ transplant.
   Prineville's Justine Enyart is one of the more fortunate ones. She received a new liver five years ago, after struggling with liver disease for years.
   To celebrate her new lease on life and as a way to bring awareness to the need for organ donors, Enyart will be one of 50 athletes from the Northwest attending the U.S. Transplant Games sponsored by the National Kidney Foundation.
   Today, it would be difficult to detect that Enyart struggles with such a life-threatening disease. Her eyes shine with enthusiasm and her skin reflects a healthy glow _ quite unlike what it was almost ten years ago when the yellow cast associated with liver disease, caused her to wear long sleeves and dark glasses.
   Enyart discovered that she had a liver condition quite unexpectedly after donating blood for the American Red Cross when she was only 18.
   "I got a letter from the Red Cross saying that my liver enzymes were up, that they couldn't use my blood, and that I needed to see a doctor right away," she explained.
   To illustrate the immediacy of the situation, Enyart's mother-in-law Clara Ahlberg added, "When Justine came home during a school break, her skin was a sickly yellow color. We insisted that she go see a doctor immediately."
   The revelation that her liver was diseased, led to years of struggling with serious health issues stemming from what was eventually diagnosed as auto-immune hepatitis.
   After several years of harrowing situations involving doctors, a myriad of medications, and late night visits to the hospital, it became evident that more serious measures were in order.
   "In 1995, after my son was born, the doctors decided that the medication wasn't working, and that I needed to have a transplant," she explained.
   In order to be eligible to receive an organ, patients must be evaluated by a transplant specialist to determine that they do indeed suffer from end-stage failure of a vital organ. Receiving such a diagnosis means that without a transplant or other significant supportive care, death is imminent.
   After being accepted as a candidate for vital organ transplant Enyart's name was added to the United Network for Organ Sharing (UNOS) list.
   When someone is added to the UNOS list, their name is added to a "pool" of names of people waiting for an organ.
   When a potential donor becomes available, each patient is matched by the computer against the donor characteristics. The computer then generates a list of patients ranked in order based upon specific medical and scientific criteria, eliminating any potential for bias.
   When the patient is selected, he or she must be available, be healthy enough to tolerate major surgery and be willing to undergo transplant immediately. Like other potential transplant patients, Enyart was required to wear a beeper, so that when the call came in, there would be no waiting.
   "We got the call at 3 a.m. in the morning. Telling me we needed to get to the hospital right away," she said. After several emotional moments, Enyart, who was living in Beaverton at the time, was transported to OHSU and prepared for surgery.
   Unfortunately, that donor liver wasn't as healthy as the doctor had hoped, and Enyart and her family were sent back home, without the transplant.
   "Early in July of 1997 I got another phone call saying they had another liver for me," she said. "I was in intensive care for a week following the surgery, which was a pretty remarkable recovery for a liver transplant."
   Recovering her health has not been an altogether smooth process. An incident of organ rejection landed her in the hospital a few months after the initial surgery. However, with the exception of suffering from diabetes induced by medications, Enyart's health has maintained a fairly positive upswing.
   Having gone through the tribulations associated with major organ failure, Enyart along with the other members of her immediate family have become advocates for the organ donorship program and are eager to offer insights into the mysterious world of organ donorship.
   The decision to become an organ donor is best made ahead of time. "The time of death is a very hard time to ask someone to donate an organ," explained sister-in-law Shiela Small. "So if people would consider it beforehand and discuss it with their family, then the decision to become an organ donor is predetermined and there are less decisions to be made by family members."
   Enyart and Small believe that demystifying the process of organ donorship might go a long way for helping folks on the waiting list.
   According to the Oregon Donor Program:
   g More than 1,308,000 Oregonians have a D code for donor on their license.
   g A single organ and tissue donor can potentially help as many as 100 people.
   g There is no added cost for organ and tissue donation for transplant.
   g There is no age limit for eye donation or whole body donation for medical education. 75 is the upper age limit for bone, skin, and internal organ donation.
   g Organ and tissue donation usually will not interfere with the timing of funeral services, will not prevent an open casket and is supported by all major religions.
   g Family members must sign a consent form at the time of death even if you have a donor card or D code, so it is very important to discuss your wishes with your family NOW.
   The 2002 U.S. Transplant Games will be June 26-29, 2002 at Disney's Wide World of Sports™ Complex in Lake Buena Vista, Florida.
   The Northwest Region National Kidney Foundation has a goal of raising $120,000 to send at least 50 families and 20 donor families to the U.S. Transplant Games. Enyart hopes to raise $7,000 through local contributions.
   Highlighting the tremendous need for more organ and tissue donors, the four-day athletic competition brings together recipients of organ transplants and is open to all ages and athletic ability.
   As much as the Games is an athletic event that calls attention to the success of organ and tissue transplantation, it is also a celebration of life among recipients, their families and friends.
   "We are just getting involved in the competition for the first time this year," Small explained. "We are doing what we can do to promote and support the games."
   Enyart will be entering the games under the swimming competition and hopes to train for the competitions over the next several months.
   "The games give the recipients a chance to get out and be active. For so long they are idle due to the illness," Small said. "This way they can get together and say `hey, I'm alive, and thank you.' "
   Looking for sponsors is a high priority for this Prineville family. "We are looking for a place for Justine to swim, so that she can get into condition, and we are also looking for anyone who would like to sponsor her in other ways as well," explained Small. "Cash donations, equipment and supplies can also be sponsored, and everyone who contributes will be recognized by the National Kidney Foundation."
   Tax deductible donations can be made on behalf of Justine Enyart to: The National Kidney Foundation of Oregon & Washington, 1006 SE Grand, Suite 100, Portland, OR 97214, call (503) 963-5364 or visit their website at www.kidneyorwa.org/Donation/index.htm.
   Non-deductible cash donations can be made to the Justine D. Enyart Fund at the Community First Bank in Prineville or call 447-5380 for more information.