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Dear Central and South Texas Communities, Even though great strides have been made over the past five decades in the field of transplantation, challenges remain. Transplantation is now an accepted part of medicine, but donation is not an accepted part of our culture and society. These are challenges that affect so many in Central and South Texas communities. With an ever-increasing national transplant waiting list caused in a big part by the shortage of organs, the Texas Organ Sharing Alliance (TOSA) remains committed on a daily basis to work with family members, hospital staff and many others to maximize the opportunity for organ donation. Together, we all face the reality that a name is added to the national waiting list every 11 minutes and that an average of 18 people will die each day waiting for a donor organ. This is why there is such an urgency associated with the effort to increase donation and for organizations like TOSA to speak out on the critical shortage of organs. Our ongoing educational efforts include the stories of the graciousness and generosity of our donors and donor families — without them there is no donation. They take comfort in knowing their loved one’s gift will save someone’s life. In addition, those who have received the “Gift of Life” of organ donation tell their stories with grateful appreciation. These are the stories of hopes realized, dreams coming true and the thankfulness for the opportunity to live a life of new possibilities — “a life with a whole new meaning”. I would like to invite you to take a few minutes to review this special presentation on donation in this special supplement to the issue of SAN ANTONIO WOMAN. Meet some of the people who last year helped increase donation and donation awareness in Central and South Texas. Thank you for your interest in the everyday miracle of donation and in helping the Texas Organ Sharing Alliance do its work to improve the health of our community. Sincerely,
Patrick J. Giordano, MHA, FACHE Chief Executive Officer
www.txorgansharing.org • Donor 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 104 A • McAllen, Texas 78501 • 956.630.0884 O • 956.687.7185 F
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You have the power to Donate Life. Organ, eye and tissue transplants offer patients a new chance at healthy, productive and normal lives and return them to their families, friends and communities. Transplantation is one of the most remarkable success stories in the history of medicine. It provides help to thousands of people with organ failure. In addition, transplanted tissue offers hundreds of thousands of people active and renewed lives. But transplantation requires the commitment of organ, eye and tissue donors. Unfortunately, the need for donors is much greater than the number of people who actually donate.
Statistics on Organ, Eye and Tissue Donation • Last year, more than 8,000 deceased donors made possible more than 22,961 organ transplants. In addition, there were nearly 7,000 transplants from living donors. • There are also approximately 30,000 tissue donors and 40,000 cornea donors annually, providing more than one million tissue and cornea transplants. • The need for donated organs, corneas and tissue continues to grow. Nearly 103,000 men, women and children currently await life-saving organ transplants. Sadly, an average of 18 people die each day because of a lack of available organs.
AS A DONOR, YOU CAN SAVE AND ENHANCE THE LIVES OF MORE THAN 50 PEOPLE. Organs: heart, intestine, kidneys, liver, lungs, pancreas Tissue: bones, corneas, heart valves, skin, tendons
How the donation process works Your commitment to donation will not interfere with your medical care. Organ, eye and tissue donation becomes an option only after all life-saving efforts have been made and death has been declared. Consents for donation is confirmed, and your family is asked to participate in the process by providing medical history. Surgical procedures are used to recover donated organs, eyes and tissue. The donor is always treated with great care, respect and dignity.
Who receives donated organs and tissue Organs are distributed based upon medical information like blood type, body size, and tissue type matching through a national computer network operated by the United Network for Organ Sharing (UNOS). It is illegal to distribute organs based on nonmedical information such as wealth, citizenship or celebrity status. Tissue is distributed based on patient need, availability and medical criteria.
Glenda Dawson Donate Life – Texas Registry The Texas Department of State Health Services maintains a state registry of individuals who have officially indicated their wishes to donate organs, eyes and tissues. Anyone can register to be a donor. The Registry is funded by a $1 voluntary contribution that Texans can make when applying for or renewing their driver license or identification card, or when registering their vehicle.
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Questions and Answers Regarding Donation “If I’m admitted into the hospital and the doctors know I want to be a donor, will they still try and save my life?” There is no conflict between saving lives and using organs for transplant. Medical professionals will do everything they can to save your life. The doctors who work to save your life are not the same doctors involved with organ donation. It is only after every attempt has been made to save your life that donation will be discussed with your next-of-kin. “I carry an official Glenda Dawson Donate Life – Texas Registry card, and it is in my will that I want to be a donor, so do I still have to tell my family that I want to be a donor?” Even with first person consent/donor designation, it is still recommended that you inform your family of your wishes to donate so there are no surprises at the time of your death. Some states do require consent from your legal next-of-kin for donation to occur, so it is extremely important that you inform them of your wishes. A will is accessed by the family well after the death has occurred and is useless for expressing donation wishes. “Won’t donation cost my family a lot of money if I become a donor?” There is no cost to the donor’s family for organ donation. Hospital expenses incurred prior to brain death declaration and funeral expenses after the donation are the responsibility of the donor’s family. All costs related to donation are paid for by the organ procurement organization. In fact, many organ procurement organizations (OPOs) have dedicated staff to review hospital bills to ensure that donor families are never charged for donation-related expenses. “Can I still have an open casket funeral if I am a donor?” The donor’s body is treated with a great deal of respect and dignity. The recovery of organs is conducted under standard, sterile conditions in an operating room by qualified surgeons or qualified recovery personnel. It is extremely unlikely that the process will disfigure the body, or change the way it looks in a casket. “Will anyone want my organs? I think I’m way too old, and I have been sick in the past.” At the time of death, the appropriate medical professionals will review your medical and social history to determine if you are a candidate for donation. Anyone, regardless of age, can be considered for organ donation. With recent advances in transplantation, more people than ever before can donate. “How do I know that I will be really dead before my organs are procured?” Organ donation occurs only after death has been determined by a doctor (in some states two doctors) not involved in transplantation. To donate organs, a patient must be brain dead or meet the criteria of organ donation by cardiac death (DCD). “Can organs be given to different racial groups or individuals of the opposite sex?” In most cases, race and gender are not a factor. However, organ size is critical to match a donor heart, lung or liver with a recipient. People of similar ethnic backgrounds are more likely to match each other than those of different racial heritage. Cross-racial donations can, and do, happen with great success when the matches are available. “Can the donor family meet the recipients?” The identity of all parties is kept confidential. The donor family and transplant recipient may receive information such as age, sex, occupation and state in which they reside. Individually, the recipient may be told the circumstances of death, and the donor’s family may be informed of the transplants that were performed and receive information about the health status of the recipients. Donor families and recipients are encouraged to communicate with each other through the organ procurement organization (OPO). While the initial contact is anonymous, families and recipients may decide to communicate openly after a period of time and if both parties are interested, they may meet. For more information regarding organ donation or how to sign up on the Donate Life Texas – Donor Registry,
Call 866.685.0277 or visit www.txorgansharing.org
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December 20, 2004. A phone call that would define our lives. I had just returned home from work to begin my Christmas vacation. My wife, Yvonne, was baking Christmas cookies for the holidays. A phone call that would lead us to a car accident scene and eventually to the hospital where the doctors would inform us of the news that parents fear most. Our 16 year-old son was in a deep coma, and his chances of survival would take “more than a miracle.” The following days were spent watching our son’s life slip away until he was pronounced brain dead on December 22, 2004. My eyes would see an empty chair at the dinner table and the unopened gift under the tree. They would watch as my wife would give him his last bath with the same love in her eyes as when she bathed him as a baby. My ears would no longer hear his voice or laughter. My legs found me shopping for black clothes on Christmas Eve and clothes to bury Kevin in, amidst a backdrop of happy shoppers at the mall when Christmas carols were being played. The last clothes we would every buy for him. How precious his life was! December 22, 2004. Five people would receive phone calls that would change their lives. Five life-saving organs. Eyes that would get to see grandchildren for the first time. Eyes that would get to see relatives graduate and get married. Eyes that would see the world in a different perspective. Their ears will continue to hear their loved one’s voice. Their legs will fill those empty chairs at the dinner table. How precious their lives are! And for those loved ones, Helen Keller once said that “the most wonderful things in life are neither seen nor touched, but are only felt with the heart.” These are many hearts that won’t be broken. Finally, certain things come to mind about the whole experience. One is the compassion of the nurses and hospital staff. Anther is the fine work being done by the Texas Organ Sharing Alliance (TOSA) and all organ donation entities by helping to keep Kevin’s memory alive and by touching the lives of so many people. Still another is that we got to meet one of Kevin’s organ recipients, and it gave us the feeling that a part of him still lives on. The good Lord is the Master of making good come out of tragedy, and He has sustained us through this period in our lives. I will end this with a quotation by Seth Parker; “You may not have saved a lot of money in your life, but if you have saved a lot of heartaches for other folks, you are a pretty rich man.” Thank You! Don and Yvonne Soucie, Donor Parents of Kevin Soucie
December 22, 2004. My name is Debra C. Aparicio, and I was born in New York but raised in Puerto Rico. Currently, I am retired from the Army Nurse Corps, where I served 21 years taking care of soldiers and their families until I became ill. Between my husband, Felix, and me, we have four wonderful children and 11 grandchildren. After my retirement I decided to do volunteer work, and I continue to do so. I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF), which causes hardening of the lungs, at Landstuhl Regional Medical Center in Germany in July 2002. By December, I was requiring more oxygen and was transferred to Texas. In August 2004, the requirement for oxygen increased, and by October 2004 it was even harder for me to breathe. That is when it became necessary to have a transplant. I was evaluated and placed on the national transplant waiting list in October 2004 and waited approximately two months. On December 22, 2004, 11:30 p.m., we received the call that changed our lives forever! A grieving family, in the midst of losing their loved one, decided to donate their son Kevin’s organs. Early morning on December 23, 2004, I received Kevin’s left lung, giving me a second chance in life. I remember waking up and taking a deep breath . . . it was a miracle in the works. The doctor came to my room and told me that my lung was from a healthy 16-year-old male, and all I thought in that moment was about Kevin’s parents. While I was celebrating my second chance in life, they were mourning the loss of their beloved son. Every year, on 23rd of December, I celebrate life and at the same time I grieve for his parents and honor his memory. I pray and ask God to comfort them and give them peace. Words cannot express how grateful we are for their decision to donate life. Because of their decision to donate Kevin’s organs, I was able to breathe again, see my granddaughter and grandson born, tell my husband and my family how much I love them, to see life in a different way, to help people, and to PRAISE GOD for His miracles. Forever grateful, Debra C. Aparicio Pictured above is the Soucie Family: Kevin’s brother Patrick and parents, Don and Yvonne Soucie. Yvonne Soucie touching memorial brick of son, Kevin Soucie. To the right is Debra C. Aparicio, donor recipient pictured seven months after transplant.
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March 1, 2008. It was 4 a.m. on March 1, 2008, when I woke to a knock on my bedroom door. My mom was standing in the doorway and saying for me to get up and get dressed. She said we needed to go to University Hospital. My son, Randy, had been in an accident. There was no traffic at that time of the morning, so my mom and I made it to the hospital in record time. On my way to the hospital, my mom told me that the hospital was not the one who had called to let us know; rather it was EJ, Randy’s friend. Once at the hospital, there at the door were Randy’s friends, EJ and GG, who had just begun dating. GG didn’t say a word; her face alone said it all. I saw my mom come into the room after talking to Randy’s friends. At the same time, I was being called by a nurse who led me down a hall and through some double doors. On the other side of the doors was my son, Randy, who was on a table with his eyes closed. I could tell things were not right. The doctors were talking to me but I didn’t hear a word. I just remember a couple of words...surgery, severe head trauma, sign here and do you understand what we are saying, Mrs. Grady? Calmly, I signed the papers, kissed my son and told him to come back to me... and then he was led away to surgery. I phoned my husband and told him to come to the hospital immediately. I asked him not to bring Randy’s sister and brother, but rather, to wake up my dad, tell him what was happening and to bring the children later. Less than 4 hours later, all of Randy’s friends that could make it were there at the hospital. Over a hundred people for my son. I asked that they all say their goodbyes to him, and the nice lady at the hospital made sure it happened. Time stood still from the time of the accident. It seemed to me like it all happened in one day, but it was more than 24 hours but less than 48. I had to make decisions, things I never wanted to even contemplate. Would Randy want to donate? But of course he did, that’s the kind of person he was. He was strong and funny, so full of life. “Mom, save that little girl or boy,” that’s what his Irish eyes would say. His dad and I signed the TOSA papers giving consent to donate Randy’s organs. After signing, I thought of the wonderful possibility that there might be a young person that would love to skate on his skateboard and that it would all be a part of Randy’s doing. Pictured above is my beloved son, Randy, with his skateboard that he rode since he was old enough to ask for one.
Since my transplant, I have regained the ability to participate in the active life of my family, to include walking, rafting in Colorado and helping my daughter start a new business. I have even gone back to coaching soccer for 7 to 10 year olds. Thank you for your generosity and courage in giving me the chance to continue my life. I will always try to share your example of selfless love with others, and your loved one is always held in the hearts of my family through our prayers. Sincerely,
Lloyd, 66 years old Kidney Recipient, 2002 Volunteer
Since my transplant, I have snorkeled the Caribbean, climbed the Mayan ruins, skied the Colorado Rockies and built a home with Habitat for Humanity. Most important, though, I have appreciated my family. Every day, when I see their faces, I am reminded that I am here because of someone’s selfless gift. I work each day to give something of myself, either to my family or to my community in honor of that gift and the hero that made my renewed life possible. Thank you for the gift of your loved one. They will be remembered and honored by me and my family always and forever. Sincerely,
Tom, 49 years old Heart Recipient, 2006 Volunteer
New Texas Registry Makes Donor’s Designation Official and Legal Recent surveys show nine out of ten people think organ donation is a good idea; however, they do not know what steps to take to make their wishes official. There is a new method in Texas for people to register their intent to donate. The NEW online state registry is where Texans can officially register as organ, eye and tissue donors. On September 1, 2006, the Texas Legislature mandated the creation of the statewide registry and stipulated in May 2007 that it be renamed in memory of Rep. Glenda Dawson. A life-long teacher, Glenda Dawson served two terms in the Texas House of Representative’s after receiving a donated kidney from her sister. Rep. Dawson was a fierce advocate for public education and public health and earned the respect of fellow legislators on both sides of the aisle. The Glenda Dawson Donate Life – Texas Registry was launched by the Texas Department of State Health Services (DSHS) as a revised online organ donor registry to make it easier for Texans to register as organ, eye and tissue donors. Before the Web-based registry, there was no official state list in Texas of people who wanted to consent to being donors. Today, the new Glenda Dawson Donate Life – Texas Registry is the only official Web-based donor registry of the state. For those who register, the list can help ensure their wishes are carried out at the appropriate time. If in the last two years you have not taken the necessary steps to becoming a registered donor, you are encouraged to register when obtaining a driver’s license/ID, or simply by visiting and registering online at www.donatelifetexas.org or donevidatexas.org.
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As Hispanics,
we share a bond rooted in a proud culture of tradition and deeply passionate beliefs. Today we share something else: the unique ability to help our families, friends and community members who are waiting for an organ, eye and tissue donation. There is an urgent need for Hispanics to donate their organs, eyes and tissue. Half the people — 4,500 of our friends and neighbors — on the waiting list for organs in Texas are Hispanic. That is because their greatest chance at finding a matching organ or tissue is from Hispanic donors, and not enough of us register to donate our organs. If we do not help, other members of our community will lose their lives waiting for a transplant that never comes. Talk to your family and your friends. You will probably discover that the need for donation is closer than you think. Then, take part in something we all can do for our community and ourselves. Register to be an organ, eye and tissue donor by visiting www.donatelifetexas.org. Most Hispanic community organizations support organ, eye and tissue donation. In fact, all mainstream religions — including the Catholic Church — consider organ donation an act of charity. It is important to register now with the official state donor registry, the Glenda Dawson Donate Life – Texas Registry. In the past, you may have registered to be an organ donor by filling out a donor card or telling someone at a driver license office your wishes. Your registration, however, may not have been officially documented, and you must register again. If you’re not sure that you registered, you can sign up right now to make your wishes known. It’s quick and easy.
WE KNOW YOU MAY BE THINKING, “I don’t believe in organ donation because …” “If I am in an accident and the doctor and hospital know that I want to be a donor, they will not try hard to save my life.” The medical professionals who treat you are not aware of your organ, eye and tissue donation status. They will do everything in their power to save your life regardless of whether or not you are registered as an organ donor. Any medical team treating you is completely separate from a transplant team. “My religion does not support organ donation. My priest will not approve of this.” All mainstream organized religions support organ, eye and tissue donation. In fact, both the current Pope, Benedict XVI, and former Pope John Paul II have strongly supported organ donation. Pope John Paul II called organ donation “a sincere gift that expresses our call to love and communion.” Isn’t it time to answer that call? “My family will have to pay or will be charged for donating my organs.” Your family doesn’t pay anything for the donation of your organs. A nonprofit organ procurement organization (OPO) will pay those costs. Do not believe myths about organ donation. Help our community and our people in a way only we can. If we do not, who else will? Register to be an organ donor and donate life today!
www.txorgansharing.org • Donor Information Line: 866.685.0277
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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 Phone: (512) 459-4848 Fax: (512) 459-7794
1400 N. McColl Road, Suite 104A • McAllen, Texas 78501 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