Gifts of Life: Organ & Tissue Donation
It is a wonderful act of compassion to be an organ or tissue donor, whether in death or while still living. Learn the steps for donating, what you can donate, and hear touching stories from recipients, living donors, and family members
Chronic asthma had plagued Emilie Hester since the age of 5 months. Stress made it worse.
When Emilie’s father was diagnosed with cancer and ultimately died when Emilie was 10, it stressed her. To complicate matters, the loss of her father meant she had no health insurance.
“Several times we had close calls,” says Beulah Hester, 61, Emilie Hester’s mother, who lives in Stanford. “She wasn’t able to go on to school. Her health condition worsened. She had panic attacks, which triggered asthma, which triggered more panic attacks.”
At the age of 22, Emilie suffered a middle-of-the-night asthma attack that left her brain-dead. On July 10, 2004, Beulah Hester made the comforting decision to donate Emilie’s organs to others who were awaiting transplant.
Now, parts of Emilie’s spirit live on. A man in Corbin received one of Emilie’s eyes. A woman somewhere in Kentucky received Emilie’s heart. Emilie’s liver went to a man in Paintsville. One of Emilie’s kidneys went to a grateful 19-year-old girl in Longview, Texas, Shannon Sullivan, who is now attending college.
What made Beulah Hester’s decision easier was a brief conversation they had while Emilie was in high school. Emilie Hester specifically told her mother she wanted to donate her organs upon her death, and Hester feels at peace that she’s honored that, and allowed others to live longer lives because of it.
“Sometimes I go to malls and I wonder if I’m passing right by someone who has her heart,” Hester muses. “It’s so rewarding. There are things in my life I can’t change, and there is no sense dwelling on that. I miss Emilie, but her organs are still living in other people. I think of all the good she’s done. Knowing how sick she was, I don’t know what her future would have been. She could have been facing a lot of things like emphysema and cancer. I have to believe the Lord knows best.”
Kentucky families make difficult, but rewarding, decisions every day when they decide to become organ donors. Whether donating the organs of a beloved family member upon death, or deciding to donate part of their own bodies to help another person get a second shot at life, this significant gift impacts families across the Commonwealth.
Some individuals even receive the unique experience of being a living donor and watching the progress of those now sustained on their own gifts of life.
The good news is that the general public is supportive, even overwhelmingly so, of organ donation. A recent survey conducted by the Coalition on Donation, a not-for-profit alliance of organ donation organizations, indicates that 90 percent of the American public supports organ donation.
But the bad news is that people don’t always know what to do about their desire to help others: only 34 percent understand how to designate themselves as a future organ donor, the Coalition on Donation survey indicated.
Two groups in Kentucky, Trust for Life and Kentucky Organ Donor Affiliates, are ready to answer your questions in order to educate and simplify the process, whether you are signing your driver’s license, have questions before you make your decision to become a donor, or if you are ready to donate.
For details on how you can become a donor, see “Trust for Life driver’s license program” and “Who do I contact if I have questions about donating?” sidebars.
Many Kentuckians Are Waiting
Demand for organ and tissue donation is strong, with some 653 people in Kentucky waiting for organs right now, says Jenny Miller Jones, director of education of the Kentucky Organ Donor Affiliates. With increasing rates of diabetes and heart disease in the United States, those numbers are expected to increase, which is why organ donation officials are urging people to consider signing up to become an organ donor or consider a living donation.
Despite overwhelming public support and advances in medicine, only 55 percent of Kentuckians who can donate a loved one’s organs at the time of their death actually do so, and only 45 percent of Kentucky residents have indicated on their driver’s licenses that they want to be an organ donor, Jones says.
Surveys indicate the main reason some don’t go along with it is because they had not discussed organ donation with their loved one. In the absence of approval, family members tend to go against it because they did not know the person’s wishes. Berkeley Scott, executive director of the Kentucky Circuit Court Clerks Trust for Life Organ Donation Awareness Program, says to make your intentions known today that you want to be an organ donor. “It’s not something that has to be brought up more than once, but it is important to discuss it,” Scott says.
Living Donors Needed Too
Organ donation, though, is not just for the dying. People can give a kidney, part of their liver, or bone marrow to help another person survive the ravages of a disease.
Jason York, 30, of Tompkinsville, knew he wanted to donate part of his liver to help the child of a high school friend as soon as he heard about the newborn’s illness. York was always underweight, so his smaller-than-average liver was a great fit for Saylor Kirkpatrick, a precocious toddler who now lives in Jacksonville, Florida, with her parents, Dr. David and Andrea Kirkpatrick.
York felt particularly compelled to help save the baby because he and his wife had a child who was stillborn, and he didn’t want any other person, especially a friend, to experience that kind of grief.
It must have been meant to be, because York says the transplant was much easier for Saylor than anyone anticipated. Transplanting the left lobe of his liver into Saylor Kirkpatrick “was like changing a spare tire,” York says. “They took mine out and it fit so perfectly that they were able to sew her right back up.”
Today, Saylor is a bright and happy child because of York’s donation. York believes his story makes the case for organ donation. “I just want people to be aware of the situation,” York says. “You can do this. You can sign your license and be an organ donor that way. I didn’t have a clue before I did this. I didn’t know you could donate part of your organ as a living donor.”
Some have even found a way to donate more than once. Bone marrow can be precious to a person fighting disease, as Air Force Maj. Keith Travis, 34, discovered while serving in the Air Force. Travis signed up with a bone marrow registration service while serving at Grand Forks Air Force Base in North Dakota, and was called in 2001 because he was a match for a Louisiana woman. Travis grew up in Taylorsville and now lives in Valdosta, Georgia, where he serves in the military.
Travis gave bone marrow to the Louisiana woman again in 2004. Each time, Travis says the procedure went fine medically. But the second time, “It was a little bit rougher emotionally because I already knew her,” Travis says. “It drives you crazy thinking ‘Is she going to pull out of this, and why isn’t my bone marrow working faster?’ You get impatient with results.”
Shannon Sullivan, 19, of Longview, Texas, who received Emilie Hester’s kidney, says it began processing urine from her body while doctors were still transplanting it.
Now, a year later, she’s a normal college-age teen, ready to enter her second year of college without being tied down by 10 hours of dialysis a day, which was what her life in high school was like.
She’s a normal kid, but with a newfound potential career as a physician’s assistant, as she was fascinated by the medical procedures she went through. And she’s got a particularly impassioned view on organ donation.
“You aren’t using them after you die,” Sullivan says. “Why not donate them? It doesn’t make any sense to me why you wouldn’t want to perform such a selfless, wonderful act for someone else.”
TRUST FOR LIFE DRIVER'S LICENSE PROGRAM
Kentucky Circuit Court Clerks Trust for Life Organ Donation Awareness Program recommends the following:
1. Declare your intent when you renew your driver’s license, or sign it now.
2. Get a sticker from your Circuit Court Clerk’s office (where you renew your driver’s license in Kentucky) or from the Kentucky Circuit Clerks Trust for Life to place on the front of your license to call attention to your decision.
3. Tell your spouse, parents, family, and friends of your decision so they can carry out your wishes.
Trust for Life is an organ donation awareness program, created in 1992 through legislation sponsored by Kentucky Circuit Court Clerks, that allows individuals to donate $1 to the organ and tissue program through the driver’s license program in order to educate, raise awareness, and promote registration. More than $4 million has been raised in Kentucky’s 120 counties since its inception. In 2003, more than 46% of all Kentuckians obtaining a license contributed. Since the beginning of the program, the number of organs donated in the state each year has risen 62%.
For more information, contact Trust for Life at (866) 945-LIFE (5433) or go online to www.trustforlife.orgwww.trustforlife.org.
WHO DO I CONTACT IF I HAVE QUESTIONS ABOUT DONATING?
Kentucky Organ Donor Affiliates (KODA) is the non-profit, federally designated organ procurement organization that serves the state of Kentucky to link donors, families, and hospitals together for organ or tissue donation. KODA is the link between hospitals where donation may occur and all transplant centers in the U.S. KODA can provide clinical answers to your questions if you are interested in donating organs or tissues, in addition to providing general public education. The Important Facts section of their Web site provides answers to many general questions.
Kentucky Organ Donor Affiliates
106 E. Broadway, Louisville, KY 40202
Other Kentucky KODA offices:
Lexington (859) 278-3492
Paducah (270) 443-0658
Bowling Green (270) 793-9897
LOCKS OF LOVE
About two years ago, Ellie Hobgood was letting her hair grow long while she made up her mind about a hairstyle. Then, by chance, she heard about Locks of Love, and decided to make a full-scale effort to grow out her hair and donate it to the organization.
“It doesn’t cost anything,” says Hobgood, who is an administrative assistant for the editorial staff of Kentucky Living. “If you can help someone else out and it doesn’t hurt you, why not?”
Locks of Love is a Florida-based non-profit organization that gathers donated hair, usually in 10-inch ponytails, combining it with other hair and having it made into wigs for children who have lost their hair due to disease or other medical problems.
According to Linda Borum, assistant to the executive director of Locks of Love, the organization gets about 3,000 ponytails donated each week. Locks of Love has served more than 2,000 people in the U.S. and Canada since 1997. In the past two years, 10 children from Kentucky have been given wigs through Locks of Love.
Wigs are free to children unless families make more than $100,000 annually; those above that income level are asked to pay a fee on a sliding scale not to exceed $1,000, Borum explained. All wigs go to children 18 years old and younger, and are made specifically for each child.
“It can’t be pulled off,” Borum says. “They can be a child. They can swim in it and play sports in it. We don’t recommend they sleep in it, except for special occasions like sleepovers. It is 100 percent human hair, so it can be styled any way.”
Borum emphasized that the organization would like to see more children applying for wigs, as there is no waiting list at present.
Salons across the nation provide free haircuts to those who want to donate and handle the shipping of donated hair to Locks of Love. For more information on how you can donate your hair and where, go online to their Web site at www.locksoflove.org.
WHAT CAN YOU DONATE?
Both living and deceased donors can give part of their bodies to others. Here’s a short list of what can be donated, according to the Kentucky Organ Donor Affiliates:
Kidney, bone marrow, and in some cases, part of their liver
Organs: heart, kidney, liver, lung, pancreas, and small bowel
Tissues: bone, cartilage, skin, corneas, heart valves, saphenous veins, tendons, and ligaments
KEYWORD EXCLUSIVE: FINDING A MATCH
To learn how patients are matched to donors on transplant lists. click here: transplant program