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Our Mission To maximize quality organ donation within the Texas Organ Sharing Alliance service area and to provide the regional transplant centers and the national Organ Procurement and Transplantation Network with a professional and responsive organ recovery program. In so doing, the Texas Organ Sharing Alliance will constantly maintain the utmost consideration and concern for the donor family, the potential donor and donor hospital staff.
Contact TOSA if you would like to: Enroll in the new Glenda Dawson Donate Life — Texas Registry. Obtain organ, eye and tissue donation information. Request speakers for schools, churches, civic organizations or health fairs. Become a volunteer and help raise awareness of donation!
Dear Central and South Texas Communities, The Texas Organ Sharing Alliance (TOSA) is delighted and blessed to be celebrating 35 years of serving Central and South Texas communities!
Glenda Dawson Donate Life — Texas Registry www.donatelifetexas.org www.donevidatexas.org
Through the years many of us have joined together in our efforts to develop a better donation and transplantation effort. We greatly appreciate the partnerships that have been created during the years, which have brought us to where we are now. Today, we look forward to a renewed commitment to provide every individual with the opportunity to learn and commit to becoming an organ, eye and tissue donor. Together, we take great pride in our community and value the compassion our citizens have in contributing to a better quality of life to those less fortunate. Over the years, the level of confidence and support toward donating and transplanting organs, eyes and tissues has increased. We are absolutely confident that through our community initiatives and partnerships we will continue to create a donor-friendly society. Thank you in advance for your continued commitment – should you have any questions, please contact Esmeralda “Mela” Perez, TOSA manager of communications and community development, at 210.618.5052 or by e-mail at mperez@txorgansharing.org. Sincerely,
www.txorgansharing.org Information Line 1.866.685.0277 Central Region Home Office 8122 Datapoint Drive, Suite 200 San Antonio, Texas 78229 210.614.7030 O 210.614.2129 F Northern Region 7000 North MoPac, Suite 325 Austin, Texas 78731 512.459.4848 O 512.459.7794 F Southern Region 1400 N McColl Road, Suite 104A McAllen, Texas 78501 956.630.0884 O 956.687.7185 F
Patrick J. Giordano, MHA, FACHE Chief Executive Officer
www.save8.org Special Advertising Supplement from San Antonio Woman
You Make the Difference
Organ, Eye and Tissue Donation:
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“To the world you may be just one person, but to one person you may be the world.” — Brandi Snyder Who is the Texas Organ Sharing Alliance? The Texas Organ Sharing Alliance (TOSA) is one of only 58 nonprofit 501(c)(3) independent, federally designated Organ Procurement Organizations (OPOs) in the United States dedicated to educating and providing organ donation and recovery services to families wishing to donate and to those waiting for life-saving organ transplants. Founded in 1975, TOSA serves 56 counties in Central and South Texas. The National Initiative In 2006, Donate Life America launched the Donor Designation Collaborative (DDC) to share best practices and focus on creating high-functioning registries to dramatically increase the number of designated donors in the United States. Each state formed a team of partners committed to making this happen. The initiative played an important role in forging and strengthening partnerships with the Department of Public Safety (DPS) nationwide. Why the Need? As of June 6, 2011, over 111,107 men, women and children were waiting for life-saving organ transplants in the United States. Over 10,644 are in need in the state of Texas, with an estimated 3,937 living in Central and South Texas. Because there is a critical shortage of organs to meet this need, 18 people will die today from not having received one in time, amounting to thousands of lives lost each year. Why Becoming a Registered Donor Matters Many families don’t discuss the idea of donation prior to death. When there is no license/ID donor designation, grieving families sometimes feel conflicted by not knowing what their loved one would have wanted. When a donor designation is available, the donor’s wishes can be honored, removing the burden of the decision from family. Families often draw comfort and reassurance from having this knowledge. Over 97 percent of donor registrations come directly from the DPS. A simple “yes” to the donation question from a DPS examiner could be the one that saves lives. Since the DDC launched in 2006, such partnerships have contributed to a 50 percent increase in designated donors nationwide. Making an Informed Decision… Making the decision to become a registered organ, eye and tissue donor is not easy for some people. Donor education is the vehicle to our community’s understanding about the critical shortage and need for donors. As the organization federally designated to serving Central and South Texas, TOSA is committed to conducting donation-related activities. Through these coordinated activities related to public education about the benefits of donation, we increase donor awareness and the number of people registered on the Glenda Dawson Donate Life – Texas Registry. Visit www.donatelifetexas.org or www.donevidatexas.org. Included in this special publication are special stories of lives that have been touched by donation, illustrating the profound impact that one individual has on the donation process; facts, frequently asked questions, myths and misconceptions and resource links to assist our community in creating a donation-friendly society.
www.save8.org
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Visit www.Save8.org and click on the Facebook tab to hear these and other donor families and recipient testimonials.
A Special Thank You
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Below are just a few examples of the thousands of lives saved because someone cared enough to give the
“Gift of Life.”
Ana Szulta, Pancreas and Kidney Recipient I was diagnosed as a juvenile diabetic at the age of 12. By my late 20s, I started experiencing several diabetic-related problems including retinopathy and nephropathy. In early 1989, I was told I was in the early stages of renal failure. I moved to San Antonio to prepare for a life on dialysis while I waited on the transplant list for both a kidney and a pancreas. I was very fortunate to receive my transplant just one week prior to starting dialysis. After receiving such a wonderful gift, I became a volunteer to help promote organ, eye and tissue donation. This year, I celebrated 20 years with my transplanted pancreas and kidney – thanks to my donor for sharing the “gift of life.”
Marcus Griffin, Kidney Recipient I am 14 years old and in the 9th grade. It all started in the womb for me. Doctors told my mom and dad that I would need a kidney transplant after I was born. I was diagnosed with Eagle Barrett Syndrome. At 21 months of age, I became a kidney transplant recipient. Thanks to my donor family for saving my life — their loved one’s kidney has made me the active person I am today. They gave me life — a life I share with all who meet me. May God bless all the donor families who cared enough to give to me and others who were facing death — and now look at life totally different.
Linda Meeker, Donor Wife Loved One: Dennis My husband brought such a sweetness to life. He loved being a grandfather, dad and especially a husband. Shortly before his death, we had moved, and Dennis started a weekly 3½ hour commute back and forth to work. One day on his way home he decided to take a shortcut. While waiting to make a left turn, a pickup truck rear-ended Dennis. His truck went off the road and ended up in a field. Had Dennis not been there, the impact might have been deadly to the vehicle in front of him carrying a mother and child. I believe a higher power granted the mother and her child the gift of the presence of my husband. I received the news that my Dennis had been involved in a terrible accident and the next day, a brain scan would prove he was brain dead. I knew exactly what he would want to do. Dennis gave the “Gift of Life.”
www.save8.org
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Adrian was 18 years old when he lost control of his pickup while returning home from a football game. Early one morning, I received the call that every parent dreads. My son had been in an accident and had suffered severe head trauma. When I arrived at the hospital, I saw him lying in a bed without a single scratch. It was hard to believe that the doctors were telling us he was brain dead. After a brain scan showed no activity, a TOSA representative spoke to us about organ donation. There was no hesitation, but a resounding “yes.” Adrian had indicated on his driver’s license that he wanted to be an organ donor. My Adrian helped five people by donating his heart, kidneys and corneas. Today, I am a TOSA Friends for Life volunteer, and a 2mile stretch of Highway 35 near Devine has been adopted in Adrian's memory.
Alice Driskill, Liver Recipient
Roger Moore, Donor Father Loved One: Theresa My daughter Theresa was diagnosed with asthma for the first time when she was 9 years old. Ten years later, in November 1995, she died from it. Early one morning in November 1995, a change of weather and cold front triggered Theresa’s asthma. After a week in the hospital in a coma with no signs of improvement, Theresa was taken off the ventilator for 10 minutes to see if she could sustain her own breathing. She could not. We spoke to the Texas Organ Sharing Alliance and arranged to have her organs donated. Today, I am a very active spokesperson advocating the importance of donation and sharing my daughter’s story about the “gift of life” she gave. We know firsthand about the miracle of saving someone’s life because, we have met some of the transplant recipients and learned how their quality of life has changed.
Visit www.Save8.org and click on the Facebook tab to hear these and other donor families and recipient testimonials.
In May 1990, I received my life-saving transplant after over a decade of deteriorating health. When I was told I needed a liver transplant, I was scared. At one point, I even took my name off the waiting list because I thought everyone was wrong. When my health declined rapidly in early 1990, I was so sick I could not even get out of bed, and I was placed back on the waiting list. Two days prior to receiving the call that there was a matching liver, I had welcomed my first granddaughter, Danielle. After the transplant, I was so happy that I could hear the music over the PA in the hospital. It was beautiful. Since my liver transplant, I have a greater appreciation of life, health and family. Each new day is an added blessing. I am eternally grateful to the Lord, my donor family and the entire transplant team.
A Special Thank You
Mary Jane Balderamma, Donor Mom Loved One: Adrian
www.save8.org
Programs and Resources
Contact: Esmeralda “Mela” Perez, Manager, Communications and Community Development, Texas Organ Sharing Alliance mperez@txorgansharing.org, 1.866.685.0277
How You Can Help:
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The Workplace Partnership for Life (WPPL) is a national initiative, created in 2001, that unites the U.S. Department of Health and Human Services (HHS) with the organ, eye and tissue donation community and businesses, organizations and associations to encourage the American public to become registered donors. This nationwide network of more than 11,000 "Partners" includes local, regional and national companies, associations, unions and academic, volunteer, philanthropic and community-focused organizations of all kinds. Their shared goal is promoting a "donation-friendly America" by fostering donation education and creating opportunities for individuals to sign up to save lives through organ, eye and tissue donation. www.organdonor.gov/workplace.asp. National Donation Campus Challenge: The campaign launched in 2009 brings together organ, eye and tissue donation organizations and universities, colleges and other post-secondary campuses to educate campus communities on the critical need for organ, eye and tissue donors and to increase donor registration. www.organdonor.gov/workplaceChallenge.asp. Decision Donation: A school program that gives the gift of life: Decision Donation provides a multifaceted set of materials – print, video, CD-ROM and Web-based — that teachers throughout the country can use in a variety of subject areas to educate students and encourage them to consider organ, eye and tissue donation. www.organdonor.gov/student/materials.asp. Friends for Life: The value of giving back: Men, women and children on the national waiting list continue to be inspired by what is being done by individuals, communities and the donation and transplant centers to build awareness for organ, eye and tissue donation. To date, a lot has been done by the many people who cared enough to give of their time to make a difference in their community. Yet more volunteers are needed to teach others what more can be done in our home, workplace, place of worship and community to save lives. For more information about becoming a Friends for Life volunteer, call TOSA Donor Family and Volunteer Services at 210.614.7030 or toll free at 1.866.685.0277. Customer Access to Educational Materials: Posters, brochures and testimonial CDs can be good resources to help the public make an educated, informed decision about donation. While there are numerous community outreach initiatives to educate the general public, public knowledge could still be improved. Multimedia Education: Businesses are encouraged to incorporate messages as a screensaver on picture preview monitors, scrolling marquee screens or LCD monitors to inform the public about specific activities as well as education about donation. LCD monitors also offer the opportunity to show short clips of personal testimonials and facts about donation. Volunteer Tabling: Volunteer tables in the community can be a great resource for the public to receive information and ask specific questions about donation. In some cases, the public may have the opportunity to meet a recipient or donor family member who has directly benefited from donation. Employee Newsletters: The business community is encouraged to insert thank you testimonials from recipients and donor families, a calendar of community events and stories of employees who have been personally touched by donation into their employee newsletters. Online Registration: Though most donor registrations occur within DPS field offices, online portals now play an essential role because they enable customers to register online in between registration and renewal cycles. TOSA has specific social networking pages on Facebook and Twitter to help reach these audiences. Visit SAVE8.org. Onsite Dollar Contributions: In addition to “making the ask” about donation, many DPS’s ask customers if they would like to contribute a dollar to benefit a state organ and tissue donation trust fund. Such requests have yielded thousands of dollars annually to fund educational outreach programs to educate the public about donation.
www.save8.org
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on Organ and Tissue Donation
FAST FACTS
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person can save or enhance the lives of over
50 people.
Every day in the United States, an average of 18 people die waiting for organ transplants.
During the past 10 years, the national transplant waiting list has more than doubled, with more than 111,107 people now waiting for organ transplants. One person is added to the waiting list every
12 minutes.
More than 10,644 men, women and children are waiting for transplants in Texas. Tens of thousands of others need corneas to restore sight, bone and other tissues to repair injured or diseased bones and joints, skin to heal burns, and the heart valves to replace diseased ones.
ONE DONOR CAN: • • • • • •
Donate kidneys to free two people from dialysis treatments needed to sustain life. Save the lives of patients awaiting heart, liver, lung or pancreas transplants. Give sight to two people through the donation of corneas. Donate bone to repair injured joints or to help save a limb threatened by cancer. Help burn victims heal more quickly through donation of skin. Provide healthy heart valves for someone whose life is threatened by malfunctioning or diseased valves.
Of all the deaths in the United States, only 1 to 2 percent has the potential to result in organ donation.. Unfortunately, only about 65 percent of those individuals actually donate. If everyone who could donate said yes, the waiting list for transplants would be greatly reduced. www.save8.org
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How do I express my wishes to become an organ, eye and tissue donor? Indicate your decision to be an organ, eye and tissue donor on your driver’s license/state ID or visit www.donatelifetexas.org or www.donevidatexas.org. Most importantly, discuss your decision with family members and loved ones. Are there age limits for donors? Everyone, regardless of age or medical history, should consider him/herself a potential donor. Persons younger than 18 years of age must have a parent or guardian's consent. If I put the donor designation on my driver’s license, will my wishes be carried out? The majority of states in the U.S. honor “first person consent,” meaning that if you qualified to be a donor upon your passing, your wishes will be honored first and foremost and cannot be revoked by any third party. However, it is always good to let your family know that donation is important to you. What can be donated? Organs: heart, kidneys, pancreas, lungs, liver and intestines. Tissue: cornea, skin, bone marrow, heart valves and connective tissue. Are there any costs to my family for donation? The donor’s family does not pay for the cost of organ and tissue donation. All costs related to donation of organs, eyes and tissues are paid by the recipient, usually through insurance, Medicare or Medicaid. Funeral expenses remain the responsibility of the family. Can I sell my organs? No. The National Organ Transplant Act (Public Law 98-507) makes it illegal to sell human organs, eyes and tissues in the United States. Violators are subject to fines and imprisonment. Among the reasons for this rule is the concern of Congress that buying and selling of organs might lead to inequitable access to donor organs with the wealthy having an unfair advantage. How are organs distributed? Patients are matched to organs based on a number of factors, including blood and tissue typing, medical urgency, time on the waiting list and geographical location. How does the process work? By law, hospitals have to notify Organ Procurement Organizations (OPOs) of death or imminent death. The donor registry is checked to see if the person is a potential organ, eye or tissue donor. OPO representatives will meet with the family at the hospital to discuss their loved one’s wishes, obtain a medical history and arrange for tests determining if the person qualifies to be a donor.
Is the DPS registry associated with living donation? No. All DPS registries are for deceased donation only. If you wish to be a living donor to someone in need, you will need to make arrangements at the recipient’s transplant center. You can contact the National Kidney Foundation at www.kidney.org for more information. Can I be an organ and tissue donor and also donate my body to medical science? Total body donation and organ/tissue donation are different processes handled by separate organizations. A driver’s license/ID consent is only for organ, eye and tissue donation. If you wish to donate your entire body, you should directly contact the facility of your choice to make arrangements. If I have a previous medical condition, can I still donate? Determination of suitability to donate organs or tissue is based on a combination of factors that take into account the donor's general health. This determination is done by the medical staff that recovers the organs or by the transplant team that reviews all of the data about the organ(s), eyes or tissues that have been recovered from the donor. Transplant professionals will evaluate potential donors and determine suitability for donation of particular organs, eyes or tissues when the time for donation arises. NOTE: Everyone is considered a potential donor, please don’t rule yourself out due to a medical condition.
For more information and resources, please visit www.donatelifetexas.org or call 1.866.685.0277.
How many people are currently waiting for a transplant? As of June 2011, there were over 111,107 men, women and children waiting for a transplant in the U.S. Approximately 300 new transplant candidates are added to the waiting list each month. For additional data, visit the Organ Procurement and Transplantation Network Web site: www.optn.org.
Frequently Asked Questions
Who can become a donor? All individuals can indicate their consent to donate (persons under 18 years of age must have parent's or guardian's consent). Medical suitability for donation is determined at the time of death.
www.save8.org
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Myths and Misconceptions
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Myth: If doctors know you're a donor, they won't work as hard to save you. This is a very common fear. However, this isn't possible because of the checks and balances built into the system. If you are sick or injured and admitted to the hospital, the doctors' only job is to save your life. Emergency Room doctors and nurses are not involved in the transplant process and are not affiliated with the team of surgeons who perform organ transplants. Organ transplants can only occur after blood and tissue testing is done in order to match donors and recipients; this is not done by doctors when you enter the hospital. Donation is only considered after death is declared by a physician. Decisions about who receives organs are overseen by the United Network for Organ Sharing, which ensures that the system is fair and equitable.
Myth: When you're waiting for a transplant, your financial or celebrity status is as important as your medical status. The UNOS computerized matching system does not select recipients based on fame or wealth. Organs are matched by blood and tissue typing, organ size, medical urgency, waiting time and geographic location.
Myth: Your history of medical illness means your organs, eyes or tissues are unfit for donation. At the time of death, the appropriate medical professionals will review your medical and social histories to determine whether or not you can be a donor. Even if you have had a serious health problem like diabetes, high blood pressure, heart disease, certain types of cancer or even hepatitis, you may still be able to donate at the time of death.
Myth: Organ donation disfigures the body and changes the way it looks in a casket. Donated organs are removed surgically in a routine operation similar to gallbladder or appendix removal. Donation does not change the appearance of the body for the funeral service. An open-casket funeral is possible after donation.
Myth: Your religion does not support organ, eye and tissue donation. All major organized religions approve of organ, eye and tissue donation and consider it an act of charity or leave it up to the decision of the individual.
Myth: Minorities should refuse to donate because organ distribution discriminates by race. Organs are matched by many factors, including blood and tissue typing, medical urgency and time on the waiting list. A person’s race or ethnic origin does not affect who receives available organs and tissue.
Myth: If I donate, I would worry that the recipient and/or the recipient’s family would discover my identity and cause more grief for my family. Information about donors and recipients is kept strictly confidential. For circumstances in which the donor and recipient families would like to know more about each other, arrangements can be made if permission is obtained from both parties.
Myth: I heard a story that you can be heavily drugged, then wake to find you have had one kidney (or both) removed for a black market transplant.
www.save8.org
This is a famous urban legend. While black market transplantation has occurred outside the U.S., it is only a small minority of transplants performed worldwide. The U.S. has a highly regulated system, and if there is even a slight suspicion of illegal activity, the hospital will refuse to perform the transplant. There is no documented evidence of the above scenario ever occurring in the U.S., and it would require removal of the organ by a skilled physician as well as adequate compatibility with a recipient, so the chances of this scenario occurring are highly unlikely.
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Contact TOSA if you would like to: Enroll in the new Glenda Dawson Donate Life – Texas Registry. Obtain organ, eye and tissue donation information. Request speakers for schools, churches, civic organizations or health fairs. Become a volunteer and help raise awareness of donation!
CENTRAL REGION HOME OFFICE 8122 Datapoint Drive, Suite 200 San Antonio, Texas 78229 Phone: 210.614.7030 Fax: 210.614.2129
NORTHERN REGION
SOUTHERN REGION
7000 North Mopac, Suite 325 Austin, Texas 78731
1400 N. McColl Road, Suite 104A McAllen, Texas 78501
Phone: 512.459.4848 Fax: 512.459.7794
Phone: 956.630.0884 Fax: 956.687.7185
TEXAS ORGAN SHARING ALLIANCE www.txorgansharing.org Donor Information Line: 866.685.0277
GLENDA DAWSON DONATE LIFE – TEXAS REGISTRY www.donatelifetexas.org www.donevidatexas.org