DonateLifeNC.org Volume 2 Issue 3 Summer 2013 Why Donation Matters To Me: An Eighteen-Year-Old’s Perspective In May, Courtney Montgomery became the first graduate from the Hospital School, a partnership between Durham Public Schools and the Duke University Health System. For over ten years, Courtney battled with hypertrophic cardiomyopathy and other various complications. By the age of 10, Courtney had both a defibrillator and a pacemaker: not a typical experience for any family or child. District Supervisor Reggie Kyle joined Donate Life NC staff to represent the North Carolina Division of Motor Vehicles (DMV) at the national Donate Life America conference in June. Reggie was able to meet other state driver’s license personnel and learn more about organ and tissue donation. We are so glad Reggie could join us! On April 26, 2011, Courtney received a life-saving gift heart transplant at Duke University Medical Center. I had the opportunity to talk with Courtney about growing up “sick” and how her life evolved from her diagnosis. Courtney (left) with her donor’s mother, Lisa What was it like having hypertrophic cardiomyopathy at the age of eight? I was young. To me, I was sick, and I was getting surgery and that was going to fix it. I didn’t think later on in my life I would need a transplant. In what ways were you restricted as a child? I was limited in school and in sports. Physically, I just could not do certain tasks. It created conflict between my mom and me. I was not able to understand what my mom wanted. She became extremely protective, especially after I had a defibrillator implanted one month after my initial diagnosis. What is it like being 16 and having a heart transplant? It’s hard. You want to run around with your friends, try new things, drive a car, etc. You have to be responsible. That’s hard at 16. You have a lot of maturing to do by the time you are learning that you are getting a heart to the time you actually receive one. You have to be aware of your body – no one knows your body as well you. You admitted you were against getting a transplant initially. What helped you change your mind? Continued on Page 2 Contact Us: Inspiring North Carolinians to register as organ, eye and tissue donors. Donate Life North Carolina PO Box 51262 Durham, NC 27717 Email: info@donatelifenc.org Website: DonateLifeNC.org Facebook.com/DonateLifeNC Twitter: @DonateLifeNC Page 1 “Why Donation Matters to Me” Continued from Page 1 I wanted to see someone like me receive a transplant. I had seen other recipients, babies and older adults, but not other teenagers. Then, I met Josh. He had returned to school and played sports. He had friends and could eat a cheeseburger and onion rings. If he could do it, I could. “Create A Legacy” Starting in July, we will begin three pilot programs to target the 50—64 age demographic. We will be working with membership and faith-based organizations, sending direct mail pieces, and partnering with medical professionals to break down myths (“I’m too old/sick”) to encourage people to join and remain on the NC donor registry. Help create your own legacy by signing up as an organ and tissue donor today! What motivated you in the recovery process? Everyone else's’ happiness made me happy. I drew support from my Mom, grandparents, medical professionals, and my donor family, specifically my donor’s mom (Lisa). Lisa has shown so much love to me. It took only eight days to recover. I ran my first mile ever. That was the first time I had purchased a pair of sneakers since I had been unable to run up until now. Many transplant recipients speak about their own feelings of guilt for living while someone else had to die. What is your experience with survivor’s guilt? You just have to get passed the point that the person has left the natural world and live your life. It’s important to reflect on the fact that this person helped you and be willing to accept the help. Return the favor in any way you can. Be a good advocate and a good person. What are your thoughts on recipients and donor family members communicating? It’s hard to put a time limit on it. You want to have a lot of time of what you want to say but also be mindful of the donor family’s feelings. I was scared that my donor family would be resentful. They were still in the grieving process. How often do you speak with other patients waiting for a transplant? Make a Financial Contribution Online DonateLifeNC.org When I would visit the hospital for school, sometimes the teachers will give me a head’s up to talk with kids. I visit the PICU [Pediatric Intensive Care Unit] every couple of weeks. I know how annoying it is to sit and wait in a hospital room. I also hang out with other kids and teens who had transplants. We will text and call each other, go out and have lunch. It’s nice to be on the same page with others who have shared experiences. How can we encourage people to register? Sharing Your Story? On February 1, we launched our online blog, Donation Corps, to create more dialogue on organ, tissue and eye donation. We encourage guests to share their stories, whether personal or professional. Has your life been touched by transplantation or donation? We promise writing a blog post is painless! It’s a great way to talk about how this topic touches your heart. If interested, email info@donatelifenc.org. I think we have to allow people to see more of the good that comes from donation. By being an organ donor, you are doing a huge public service. You are giving someone the ability to live their life. Michelle: “Parents have to understand the other parents love their children. There is only so much they can do when son or daughter needs a heart. You have to look at it from all perspectives. You never know when you might be the one who needs it.” So, what’s next for you, Courtney? I want to take the summer to recuperate. I definitely want to take a break from being at the hospital. Durham has been a temporary home, and I am looking forward to returning to Asheville. Additionally, I want to be there for my nine-yearold sister and give my mom a breather. I have missed doing family things, such as going out to dinner, visiting festivals, etc. I want to major in business and minor in journalism. Overall, I want to have the tools to do my own thing in life, so if I want to open a business, I have the knowledge and skills. Someday, I want to start a foundation. I feel that I have some understanding of the financial difficulty of transplants. I want to give everyone else the opportunity to undergo a transplant without fearing costs or other financial constraints. Page 2 Power of Six: Life-Saving Kidney Exchange License, Permits, IDs Whether a customer is applying for a Limited Learner Permit, Limited Provisional License, Full Provisional License, ID Card, Learner Permit, or Driver License, all individuals ages 16 and older should be asked whether they want to register as an organ donor. The question should not be available to ask to those under age 16, We truly appreciate the DMV’s role in helping to facilitate this opportunity for North Carolinians to save lives each and every day. We never know what one “yes” may mean! Check out our new Donation Corps Blog at DonateLifeNC.org/blog Living Donation Risks? For those interested in living donation, one might wonder: what could happen to me? According to UNC Living Donor Coordinator Michael James, the risks are minimal. James writes, “Since living donation is not considered a required surgery, there is extraordinary emphasis put on your evaluation to keep you safe.” Best part: living donor transplants often have very high success rates and excellent outcomes because of the living donor’s own good health. This journey started in the late 2008/ early 2009. My daughter, Stephanie, was diagnosed with end-stage renal failure. We weren’t sure at the time where to start. We knew she would be placed on dialysis, which we were dreading, but it was the only recourse for immediate help. Dialysis can bring on other health problems and unfortunately for Stephanie, everything it could do, it did. Once it was determined she would need a kidney transplant, I immediately stepped up to the plate. I was the first and only family member to be tested. Stephanie (kidney recipient) and her mother, Darlene Once the doctors determined I was a (living donor), participated in kidney exchange. good candidate, they needed to determine if I was a match for her. I was a good match but not the ideal match. This meant her body would form various antibodies that would fight my kidney. We come from a very strong faith family and so we remained faithful in Christ and kept a positive outlook especially after the transplant team at Vidant Health in Greenville introduced us to the possibility of a kidney swap. We ended up participating in the first six-person kidney exchange in the Carolinas through Vidant. The surgery took place on December 13, 2011. My kidney ended up going to a man from Greenville, NC. Stephanie received her kidney from James of Durham, NC. James’ mother, Lynnette, was also one of the three recipients that day. There are no words that can describe the love, respect and admiration we feel for each other as well as the entire Vidant transplant team. We are all bonded for life. Before the donation, I felt great physically. Emotionally, I felt so blessed to be able to make life better for not only my daughter but for someone else. The doctor’s told me that it is perfectly normal to be nervous, but oddly enough I wasn’t nervous at all. It was as if a calming peace came over me, and I just knew that I was going to be just fine. After the transplant my daughter’s feet never hit the ground. Almost immediately she began to look like herself, and she was so full of life and endless energy. Stephanie is the mother of my two beautiful granddaughters, who keep her very busy. She herself is a full-time student studying criminal justice. I work full time with the Warren County Board of Education where I’ve been employed for 22 years. My extended work family was very supportive through this whole process. I don’t know what I would have done without them and our family. Before my daughter’s medical situation, I hadn’t ever considered being a donor. This experience has given our entire family a whole new perspective on being organ and tissue donors. You can save lives by registering today at DonateLifeNC.org. Darlene Phillips, Living donor and wife of DMV Examiner Alvelon Williams Page 3 Recap: Legislative Day 2013 2013 NC Registry Data Between January 1 and May 31, 2013, we are thrilled to report that: Almost 48,000 North Carolinians joined the state donor registry at the DMV. Over 550 residents joined the state registry online through DonateLifeNC.org. 135 people joined the registry via paper enrollment forms at community events. Overall, our rates look stronger than 2012, which gives all of us more hope! Join us on Twitter: @DonateLifeNC #DonateLife Donate Life License Plates Available! You can now order your own plate from your local DMV license plate agency. Orders via the DMV website will be available later this summer. If you pre-ordered your plate and still have NOT received it, email us at info@donatelifenc.org. On May 14, we held our second annual Legislative Day at the General Assembly in Raleigh. We could not have asked for a more glorious day in Raleigh to advocate for organ, eye and tissue donation! While our legislators were very busy during “crossover week” (that Thursday was the deadline for bills to pass at least one chamber and still be “alive” for consideration Sandra Coley, donor mother, adds twigs to the arrangement as during next year’s “Short Dwain Cooper with Carolina Donor Services looks on during the Session.” If a bill does not Linking Hands For Life event at Legislative Day. In this bouquet twigs jump that hurdle, the issue is represent those who gave life through organ, tissue & eye donation. “dead” until the next Long Session in 2015), many of them and their legislative assistants took time to learn from the more than 60 advocates who joined us for the day. Our inspiring kick-off session featuring Senator Rick Gunn, the primary sponsor of Duffy’s Law which was signed by Governor McCrory in early April designating the month as Organ Donation Awareness/Donate Life Month, and former Senator Steve Metcalf, rallied the group to meet with their delegations. Steve shared his inspiring story of surviving 35 years post-kidney transplant, which brought tears to many eyes in the auditorium and reminded us of why the gift of life makes such a tremendous impact. Steve’s transplant made it possible for him to watch his son and grandchildren grow up – and to dedicate his work-life to service to our great state, first as a Senator, then as a member of Governor Hunt’s administration, and today as a highly respected and influential lobbyist. We were blessed with gorgeous weather for a Linking Hands for Life celebration led by Dawn Hall from Carolina Donor Services. This celebration featured volunteers helping to create a bouquet with twigs representing the death of donors required for the gift of life, greens representing the medical professionals that make transplants possible and flowers representing the transplant recipients who are blossoming today as a result. It was a beautiful and powerful ceremony to witness. At Donate Life NC we are reviewing feedback forms and are thrilled to see many new legislators identified as champions for donation. If you were unable to participate, you are strongly encouraged to touch base with your legislators now or even after the Session ends to educate them about the importance of the donor registry, driver’s education and the funding from the License to Give Trust Fund Commission. We are always available to help with fact sheets, statistics and advice for educating your community leaders about the power of the gift of life. You can learn more about advocacy and sharing the message at on our website at DonateLifeNC.org. Page 4 DMV Awards 2012: Presentations Given During May 2013 For our third annual Donate Life DMV Awards program, we recognized those offices in each of NC’s 14 districts that achieved either the highest and/or most improved donor designation (sign-up) rates for the year. [Above] Sanford DMV: Most Improved Designation Rate for District E and for North Carolina [Above] Boone DMV: Highest Designation Rate for District L and for North Carolina [Left] Kernersville DMV: Highest Designation Rate for District I [Above] Fuquay-Varina DMV: Highest Donor Designation Rate for District E [Left] Newland DMV: Highest and Most Improved Designation Rates for District M Did You Know? Two offices earned BOTH the highest and most improved designation rates for their districts in 2012. Congratulations to Newland and Havelock! Page 5 [Below] Henderson DMV: Most Improved Designation Rate for District D [Above] Carrboro DMV: Highest Designation Rate for District G [Above] Elkin DMV: Most Improved Designation Rate for District L [Above] Raeford DMV: Most Improved Designation Rate for District H [Above] Fayetteville (South) DMV: Highest Designation Rate for District F [Right] Manteo DMV: [Above] Lumberton DMV: Most Improved Designation Rate for District F Highest Designation Rate for District A Page 6
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