DONOR FAMILY RESOURCES
2016 FUN RUN RECAP
WHAT DID YOUR DONOR MAKE POSSIBLE?
contents Upcoming Events p.1 Behind the Scenes at The LLF p.2
from the desk of charlie alexander CEO of The Living Legacy Foundation
Donor Family Resources p.3–4 Hospital Outreach p.5
Welcome to the Winter issue of Connections!
Community Partner: The MVA p.6
Through our work with donation and transplantation, we have the privilege of meeting and working with the families of donors and donors in spirit, transplant recipients, living donors, and many other dedicated individuals who support our life-saving cause. When we talk about “what a donor makes possible,” it’s easy to focus on the numbers; the lives that can be saved and enhanced—up to eight lives through organ donation and potentially more than fifty lives through tissue donation; or the record number of organ donors in 2016—188. But every day at The LLF, we are reminded that our work is not about numbers, it’s about people. It’s about a cornea recipient being able to see her grandchildren grow up. It’s about a donor family being empowered to advocate for awareness surrounding donation and the opioid epidemic. It’s about a tissue recipient being able to walk again. Donation and transplantation doesn’t just make “life” possible, it makes life possible.
Recipient Resources p.7 2016 Fun Run Recap p.8–9 FEATURED CONNECTION
What Did Your Donor Make Possible? p.10–12 Ten Questions p.13
WINTER 2016/2017 EDITORS Allison Coleman, Laurel Gaffney, Ieesha Johnson, Taylor Massey DESIGN Ideal Design Co. CONTRIBUTORS Allison Coleman, Erin Gillard, Ieesha Johnson, Taylor Massey, Meagan O’Neill The Living Legacy Foundation is a non-profit health service organization who saves and enhances lives through organ, eye, and tissue donation. As the organ procurement organization for Maryland, we facilitate donation and transplantation in area hospitals, provide donor family support, and educate hospitals and the general public about the life-saving power of donation. We are passionate about our mission of saving and enhancing lives while honoring the legacy and generosity of our donors. © Copyright 2017
In this issue of Connections, we are diving into that idea of possibility. We meet two of The LLF’s newest staff members, who are connected by a life-saving gift. We talked with some of our hardworking hospital partners about what it means to them when a patient has the opportunity to save lives. For our Featured Connection, we highlight three organ and tissue transplant recipients who are shining examples of what can be made possible by donation. And for our recipients, we offer some best practices on how to ensure you are living your best life post-transplant. So what can YOU make possible? We all have the potential to save lives through donation—not just after our death, but today. Talk to your family about your endof-life wishes. Designate yourself as a donor. Educate your friends and coworkers about the facts of donation. Learn more about becoming a living donor. It’s up to all of us to do our part to save and enhance lives and ensure that life and opportunity is a possibility for us all.
WHAT DID YOUR DONOR MAKE POSSIBLE?
www.TheLLF.org 410.242.7000 • 800.641.HERO
Use #DonationMadePossible to share on social media.
Cover image: A small sampling of moments made possible by a donor. Hand lettering by Brittany DeNovellis. Photo by Erin Bauer. • Back cover image: The “Why We Walk” Tent at the 2016 Donate Life Fun Run. Photo by Matt Roth.
upcoming events The Living Legacy Foundation hosts and participates in several annual events to raise awareness for donation year-round. Is there a donation or health related event in your community where we can share our message? Please let us know by emailing firstname.lastname@example.org.
National Donor Day
Donate Life Month
National Donor Day, celebrated annually on Valentine’s Day, is a time to focus on all types of donation—organ, tissue, eye, blood, platelets, and bone marrow—by participating in donation or designation drives. It is also a day to recognize our loved ones who have given the gift of donation, have received a donation, are currently waiting, or did not receive a donation in time. Share our message of donation and love by talking to your friends and family about donation and sharing on social media.
Donate Life Month, celebrated nationally every April, features an entire month of local, regional, and national activities to raise awareness for donation, honor those who have saved lives through donation, and encourage Americans to register as organ, eye, and tissue donors. The LLF spends April working with hospitals and community partners to host and attend special events to spread our message. On April 21st, we ask everyone to join us and Be Seen In Green to support donation. Will you join us in sharing your #In1Word reason for supporting donation? Stay tuned to The LLF on social media for ideas about how to be involved.
celebrate generosity throughout the year
National Minority Donor Awareness Week AUGUST 1–7
National Minority Donor Awareness Week is celebrated annually in August to honor the generosity of multicultural donors and their families, while also highlighting the critical need for people from diverse communities to register their decision to save lives as organ, eye, and tissue donors. This week is also a time to promote healthful living and disease prevention to decrease the need for transplantation. Have an idea for an event during this week? Let us know at email@example.com.
Honor organ, eye, and tissue donors and spread a message of hope all year.
Want to stay up to date year-round? Join The LLF on social media!
! The Living Legacy Foundation
National Eye Donor Month National Kidney Month APRIL 16–22
National Healthcare Decisions Week MAY
Older Americans Month JULY 9–22
Donate Life ECHO
" @TheLLF The LLF
# LivingLegacyMD Like, follow, and share with us as we spread the donation message through social media!
behind the scenes at the llf The 2016 Ravens Tee Kids Presented by The LLF This past season, The LLF partnered with The Baltimore Ravens to raise awareness for donation by featuring donor family members or transplant recipients as the Tee Kid. The Ravens Tee Kid program started over fifteen seasons ago and focuses on providing children and their families a moment they’ll remember for the rest of their lives. Throughout the 2016 season, the touching donation stories of eight kids were shared with thousands of fans. After opening kick-off of each home game, the Tee Kid would run out on the field from the sidelines to retrieve the tee with over 70,000 fans cheering them
on. Tee Kid and liver transplant recipient Bella Sindler, 5, said she had the “time of her life” and received “like 100 autographs” from players and cheerleaders. Tyre Williams, 9, whose dad was an organ donor before he was born, was surprised with the Tee Kid opportunity for his birthday. He said the experience was “epic” and he will never forget meeting his idols Joe Flacco and Terrell Suggs. We are grateful for the opportunity to take donation awareness to a whole new stage and provide such a memorable experience to our donor families and recipients. Go Ravens!
Tee Kid Micah Cook and his family on the field. Micah’s Dad, Damion, was a donor and played for the Ravens.
Meet the Staff This year we have been extremely fortunate to have two amazing women join our team—Maikki Nekton and Jenifer DeMattia. While many of our employees have a personal connection to donation and transplantation, Maikki and Jenifer’s story is beautifully unique! We are so happy to have these “liver sisters” on staff at The LLF! Want to join our team? Visit www.thellf.org/careers. In June of 2014, Maikki was living a normal life as a clinical social worker, spending time with family and friends and running, until one day she woke up with extreme itchiness and bruises covering her legs. Within a week she was hospitalized and diagnosed with Primary Sclerosing Cholangitis, a rare disease of the bile ducts. In August came another shock as she was diagnosed with Cholangiocarcinoma, a form of cancer. She was told she needed a transplant, but the 18-month
expected wait was likely too long for Maikki to survive.
up every morning and live a life that you once imagined (and took advantage of).”
At first, all Maikki’s best friend Jenifer could do was offer support, but then she heard Maikki mention the possibility for a living liver donor. “I honestly had no idea a person could donate half of their liver,” Jenifer said. “What I did know was that I couldn’t make it through this life without my friend and I would be doing my children the same disservice by not trying to help someone who would enrich their lives the way I knew she would.”
Now the women are two years post-transplant and are coworkers at The LLF. In June 2016, Maikki started as one of The LLF’s Family Service Coordinators (FSC), supporting our tissue donor families. What Maikki loves most about working at The LLF is witnessing people’s generosity and willingness to help others through donation, even so soon after losing a loved one. Maikki referred Jenifer for a job as a Donor Services Coordinator (DSC). DSCs are responsible for coordinating the donation process—from the initial referral, finding matching recipients, and recovery logistics. Jenifer joined The LLF in September 2016 and now works alongside the best friend and “liver sister” she saved.
Without a second thought, Jenifer went through testing to be Maikki’s donor and amazingly, she was a match. On December 19th, 2014, part of Jenifer’s liver was successfully transplanted to Maikki. Today Maikki is cancer-free and both women are back to a normal life; playing with Jenifer’s kids and enjoying time together.
Thanks to the transplant, Maikki and Jenifer are able to celebrate many more birthdays and anniversaries together!
“Jenifer has changed my life in so many ways—but mostly I am alive today because of her. She saved my life. Not many people can look at their best friend and know that because of that person you are able to wake
“Being a living donor gave me my best friend back, inspired others around me, and has ultimately led my life down a new path,” says Jenifer. “I hope it has inspired those who know us to become donors or at least fall back on laughter and hope when they feel lost.”
donor family resources Grieving an Overdose Death Addiction is one of the greatest health epidemics of our time. Overdose is now the leading cause of death for our local donors, growing from 16% in 2015 to 28% in 2016. We are heartbroken to see how this epidemic is impacting our donor families and our community and we are dedicated to doing our part to prevent future deaths. The stigma is still very strong despite the unfortunate prevalence of overdose death and we hope this resource can shine a light on the unique challenges and difficulties that this grief entails. As more and more people are impacted by addiction, more and more families are left with the grief of an overdose death. Yet the unique experience of grieving an overdose death is still pushed under the rug. It hides out in the shadows. It is veiled in guilt, shame, stigma, and discomfort. The veil extends past social avoidance as well, with an astonishing lack of research into overdose grief.
There are some especially difficult struggles that families and surviving loved ones face after a drug-related death. The death feels avoidable and brings up feelings of guilt that something could have been done to prevent it. Sometimes there is guilt around not having known that the person was struggling with addiction or guilt because of the feeling of relief that a loved one’s long fight with addiction has come to an end. Sometimes
Grieving an Overdose Death
there is shame about the disease itself or of not having “done enough” to help. Loved ones often blame themselves or even other friends and family members for not being able to prevent the death. The stigma of addiction can also often devalue or disenfranchise the grief felt by the deceased’s loved ones. continued, next page
Resources Though it may feel like it, you are not alone. There are resources specifically for people grieving substance use deaths: GRASP (Grief Recovery After Substance Passing) has groups that meet around the country and is specifically for those grieving an overdose death. Broken No More has forums, articles, and resources for those grieving substance use deaths, and also works to change the stigma around addiction. Mom’s Tell provides information regarding substance use treatment, recovery,
education, prevention legislation and policy issues in memory of the many lives lost to substance use. It was founded by a group of moms who lost children to overdose and has been active for 15 years. Al-anon and Nar-anon are family support groups for family members of those suffering from alcoholism or addiction. Though they are not grief groups, many people find support in these groups following drug and alcohol deaths. Though each group that meets will be different, these groups are often very open and supportive of those who lost someone to overdose.
Local Support Groups: A Google search in your area or calls around to some hospices may help you locate drug-related death support groups in your area. More of these groups are forming as overdose deaths continue to increase. Also, please know our Family Services Team and Community Grief Counselor at The LLF are here to support you. If you are in need of connection to grief resources, please call us at 410-242-7000 and ask to speak to a member of the Family Services team.
donor family resources Grieving an Overdose Death continued While we know addiction touches hundreds of thousands of families each year, the family and friends of those experiencing addiction often suffer in silence due to the stigma, guilt, and shame. When someone dies from overdose this isolation often unfortunately continues. This can result in: Difficulty accepting the circumstances of the death. Reluctance to openly discuss the cause of death. Reluctance to participate in support groups or counseling. Hesitance to seek support from friends and family members. According to a 2011 study, 50% of parents who lost a child to suicide or overdose deaths did not find the support that they expected from their significant others, contributing to feelings of isolation. Overdose deaths can bring out some especially terrible comments that drive grievers further into isolation. Society might make overdose-death grievers feel that their loved one’s death is not as worthy of grief, understanding, and mourning as other deaths. The truth is, death from overdose and addiction is as worthy of grief as any other death. The stigma may prevent people from fully understanding addiction as a disease, but the more people talk about it and promote understanding and support, the less people will be lost to this horrible epidemic.
(Content adapted from What’s Your Grief, a blog by Litsa Williams and Eleanor Haley, former members of The Living Legacy Family Foundation Services Team. What’s Your Grief is a supportive blog and website focusing on the topic of grief. It promotes grief education, exploration, and expression in both practical and creative ways. For the full version of this article, including tips for coping with an overdose death, please visit www.whatsyourgrief.com.)
How To Talk About Addiction By changing the way you talk about, think about, and treat people and families impacted by addiction, you can make a difference. We are all responsible for creating an environment in which those facing substance use disorders feel empowered to seek treatment and families are supported in their grief experience. Avoid the word “choice.” Addiction is not a choice, a moral failing, or a result of “bad decisions”—it is a medically proven disease, just like diabetes, cancer, and heart disease. And it’s just as life-threatening if left untreated. Reject the word “drug addict,” “drug abuser,” and other harmful labels. It’s disrespectful to describe a human being in one or two words, especially ones with such overwhelmingly negative connotations attached. You would never say, “my mother the cancer,” you would say “my mother has cancer,” and that would surely not be the only way you described her. Please keep in mind that people with addiction are people first. Leave stereotypes behind. Addiction knows no boundaries. People of all backgrounds, races, ages, genders, and geographical locations are susceptible to this epidemic. Today 1 in 3 families are impacted by addiction—this epidemic is much more widespread than you may think.
How You Can Help End the Epidemic Educate yourself and those around you, especially kids. Learn the facts and the impact of addiction and the opioid epidemic. Talk to family, friends, coworkers, and neighbors and encourage them to learn the facts as well. Talk to children very early on (even at 9 years old) about drugs and addiction. Don’t let stereotypes and discrimination slide. If you hear someone using harmful stereotypes and perpetuating addiction stigma, speak up. You’ll be glad you did, and odds are, others around you will be too. Support people in recovery or those seeking recovery. Recovery is rarely easy; it may take multiple attempts. Help those you encounter reach recovery by being understanding, non-judgmental, and supportive.
Get trained to administer Naloxone. Naloxone is a safe, effective medication that, when given in time, can reverse the effects of an opioid overdose. This training is essential if you or a loved one uses opioids, be they legal prescription drugs or illicit. Even if you think you don’t need it, training may allow you to save the life of a stranger. Properly dispose of unused medication. Prescription drugs left in the home can end up in the wrong hands, including children and elderly family members. Take advantage of the many “drug drop boxes” in Baltimore City, Baltimore County, and many other Maryland counties. If a box is unavailable, use the Deterra pouch, a drug deactivation system that prevents misuse and protects the environment.
hospital outreach The Ripple Effect — How Donation Impacts Hospital Staff Everyone who encounters donation is affected in a different way, whether they experience the loss of a loved one or know someone who has received or is waiting for a transplant. Donation can also have a great impact on those who are not directly connected, such as the hospital staff who care for these patients. While staff may not know donor families or recipients personally, their unique role in the donation process leaves many with an enlightening experience. We sat down with a few nurses from the University of Maryland St. Joseph Medical Center’s Intensive Care Unit to find out just how working with donors, donors in spirit, and their families, has impacted their lives. A few nurses we spoke with admitted to initially being unsure about registering themselves as an organ, eye, and tissue donor. That is, until they worked with a donor. “The next time I renewed my license, I made sure I had the heart on there,” said one nurse. “Donation completely changes the situation around the death of a loved one. It offers hope in an otherwise hopeless situation and helps families find meaning through tragedy.” One nurse took great pride in the fact that her father was able to become a donor. “When we arrived at the Emergency Room with my father, the first thing I did was make sure they called The LLF to ensure he had the opportunity to be a donor.” When her son came home with his learner’s permit and told her he had registered as a donor, she was again filled with pride. “He said, ‘Of course I registered, Mom. Someone else will need this.’ I love that it was so instinctual for him.” Another nurse revealed that her husband had previously been resistant to donation, but “after years of telling him these heartwarming stories about the impact of donation, he changed his designation to become a donor. I was so excited when he told me that.”
UM St. Joseph Medical Center’s Donor Memorial Wall honors organ, eye, and tissue donors and donors in spirit.
One of the hospital’s chaplains, Kathy Edelman, is very dedicated to supporting donation. She works with families who are going through the donation process and coordinates raising the Donate Life flag in their honor. She takes the time to work with the families to honor each donor with a special and personalized ceremony. One nurse was especially touched by the tree dedication ceremony held in honor of donors and donors in spirit at the hospital. “Hearing the stories of families at the ceremony filled me with gratitude and reminded me how important donation is not just to the recipient who receives life, but also to the family of the donor.” Occasionally following a donor case, the staff will receive letters from the patient’s family. One letter particularly stuck out; “The family was very grateful at the time that their loved one could be a donor. The fact that they took the time to write to us, three months later, to express their thanks for our work supporting their loved one’s
donation demonstrated just how meaningful it was to them during that difficult time.” Though there are many positive outcomes from working with donors, there are certainly many difficulties. The nurses we spoke with unanimously agreed that the most difficult part is when donation is not an option for families who had been hoping for that silver lining. The LLF works closely with both families and hospital staff when this occurs and honors those patients as “donors in spirit.” The nurses agreed, “That means a lot to us. Losing a patient is always hard, so having that extra support is really important.” All of the nurses we spoke to agreed that donation, while being a difficult part of their jobs, is extremely meaningful to them. “Donation helps to soften the loss and provides families with the opportunity to see their loved one give life to someone else. Finding possibility and meaning in these hopeless situations is so incredibly valuable.”
community partner: the mva Donate Life Maryland Celebrates First MVA Appreciation Week Donate Life Maryland joined with partners around the country to recognize the first MVA Appreciation Week, celebrating our Motor Vehicle Administration employees who help register thousands of people to be organ, eye, and tissue donors each year. From September 17–23, visitors to the MVA saw special donation facts on display at each driver’s license counter and anyone who registered to be a donor had the opportunity to write their name on a heart and display it on the wall. Volunteers manned tables to further educate the community and answer any questions about donation. To show our appreciation for our MVA partners, we reminded them that “We DONUT know what we would do without you!” and celebrated their support of donation with donuts and coffee. If you didn’t happen to visit the MVA during that week, don’t fret—any time is a great time to show your appreciation! Next time you are at the MVA, take a moment to thank the employees for the hard work they do to register thousands of organ, eye, and tissue donors each year!
The Loveville MVA shows off their Donate Life MVA Appreciation Week t-shirts.
MARYLAND REGISTRANTS BY COUNTY Allegany County ----------------------------------- 34,548 Anne Arundel County ----------------------------- 305,713 Baltimore City ------------------------------------- 236,595 Baltimore County ---------------------------------- 378,491 Calvert County ------------------------------------- 50,063 Caroline County ------------------------------------- 16,221 Carroll County ------------------------------------- 96,942 Cecil County ---------------------------------------- 58,839 Charles County ------------------------------------- 71,393 Dorchester County --------------------------------- 15,207 Frederick County ---------------------------------- 144,721 Garrett County ------------------------------------- 14,445 Harford County ----------------------------------- 139,938 Howard County ----------------------------------- 167,049 Kent County ----------------------------------------- 10,787 Montgomery County ------------------------------ 535,129 Prince Georges County -------------------------- 320,090 Queen Annes County ------------------------------- 28,411 Saint Marys County -------------------------------- 55,049 Somerset County ------------------------------------ 9,402 Talbot County -------------------------------------- 22,062 Washington County -------------------------------- 77,922 Wicomico County ----------------------------------- 49,708 Worcester County ----------------------------------- 31,733 *as of 1/10/2017
The Parkville MVA got creative with the hearts of newly registered donors.
recipient resources Living Your Best Life After Transplant You just received the life-saving gift of a new organ! Now what? The best way to honor yourself and your donor is to live your healthiest life possible and take care of this gift. We all know eating right and exercising is important for everyone, but when it comes to life post-transplant there’s a bit more care involved. Diet The typical post-transplant diet is straightforward; keep it healthy and balanced. Fill your meals with fruits, vegetables, whole grains, and lean proteins. Avoid unhealthy fats (saturated and trans fats), foods high in sodium and in sugar. Also drink plenty of water and limit your intake of sugary drinks and alcohol. Diets may vary if other health issues are present such as diabetes or high blood pressure. Your transplant center should have a dietician who is available to discuss best meal options with you.
Exercise It’s important to get active after your transplant to help the healing process and reduce the risk of returning to the hospital. That said, there are limitations immediately after the transplant. You should avoid lifting more than 10 pounds for two months after your transplant and avoid driving for 4–6 weeks or while taking narcotic pain medications. Start with light activities such as walking and gradually increase your daily activity. Recipients have the potential to live very active lives—the sky is the limit! Talk with your doctors and transplant coordinator to make a plan to reach your goals.
Medication & Doctor Visits Part of taking care of your transplanted organ involves continued doctor visits and medication. Your transplant doctors and care team will set up regular blood draws and check-ups to make sure the organ continues to function
well. They will also have prescribed you anti-rejection medications to prevent your body from attacking the new organ. You must follow this new regime to maintain health. Additionally, you should also inform your other doctors, dentist, pharmacist, etc. you visit about your transplant and medication regime.
The Basics Practicing general healthy habits will also ensure a healthy life post-transplant. Wash your hands often, especially before you eat. Stay away from potentially sick individuals. Maintain good dental hygiene to prevent infection. Wear SPF 30 or greater sunscreen on skin exposed to direct sunlight—antirejection medications increase your risk for skin cancer.
Double lung transplant recipient Jessica Krueger Muir completed the Tuckahoe State Park Triathlon in June, 2016.
Live Your Best Life Finally, don’t forget about mental health. You may feel overwhelmed and anxious about various things after your transplant, but it’s important to take the proper steps to take care of your whole self. Your transplant team is there to support you whether it’s adjusting to managing your transplant, financial issues, or depression and mental health issues. Reach out to them or a mental health professional if you need help. Do your best to make the most of your second chance and live your best life!
2016 donate life family fun run
On October 1st, nearly 3,000 people gathered to support organ, eye, and tissue donation at the 8th Annual Donate Life Family Fun Run. Donor families, transplant recipients, hospital staff, the MVA, and donation supporters braved the weather to run, walk, or cheer the 5K and 1K distance events at Camden Yards Sports Complex in Baltimore. We also had many supporters participate virtually by “walking from home” in locations across the country. This year’s run once again featured T-Shirt Row (an area for teams to show off their team t-shirts honoring donors or recipients), food
trucks, face painting, and a photo booth. Top race finishers and our social media contest winners were awarded with the coveted Crab Medal. One of the most moving aspects of the day was the “Why We Walk” tent, where participants shared their reason for supporting donation and transplantation. The tent was a touching display of gratitude, memories, and support for those who have been impacted by donation.
some upcoming changes and start recruiting your team! Registration opens April 1, 2017 at www.donatelifefunrun.org.
Our fundraisers worked especially hard this year, raising nearly $200,000 through individual donations and corporate sponsorships. We are so grateful to everyone who helped make this annual run such a success. We hope you will join us in Baltimore for the 2017 Donate Life Family Fun Run! Follow us on social media to stay in the loop about
Thank You to Our Generous Sponsors Infinity Sponsor ($15,000)
Organ Recovery Systems
The Johns Hopkins Hospital
Champion Sponsors ($5,000)
Richard J. Princinsky & Associates
Partner Sponsors ($1,000)
Merritt Properties, LLC
University of Maryland Medical System
Christopher Rainer – LPL
Hero Sponsors ($2,500) Anatomic Gift Foundation, Inc. Bridge to Life Class Produce Group
Relive #DonateLifeFunRun! Check out all photos from the run and our photobooth on our Facebook page at www. facebook.com/TheLLF. To see participant photos, use the hashtag #DonateLifeFunRun on Facebook, Instagram, and Twitter!
Reliance Fire Protection LifeNet Health
Supporter Sponsors ($500)
EMJAY Engineering and Construction Co., Inc.
Evans Funeral Chapel
Miller’s Minuteman Press
RTI Donor Services
Greater Baltimore Medical Center
And thank you to the following companies who gave in-kind donations! Jay’s Deli, Monumental Vending, Giant Foods, Wawa, Reddy Ice, Baltimore Coffee and Tea Company, and the Class Produce Group. Above: Members of Team PB & J show off their top finisher medal.
Top 5 Largest Teams Left: The Fun Run features activities for adults and kids alike. Right: The Fun Run is a great opportunity for donor families to come together to honor their loved ones.
1. The FOG (Friends of Gene) – 115 2. Team Despina – 89 3. BryStrong4Life – 88 4. YOLT – 69 5. Team Brian - 64
Photos by Matt Roth.
What Did Your Donor Make Possible? With over a million recipients of organ, eye, and tissue donations, it’s incredible to think of the profound impact that all those donors have had on their recipients. For some, a transplant means the opportunity to see their grandchildren grow up. For some, it means the ability to play basketball again after a devastating injury. And for some, it is the very heartbeat that enables them to live another day. We never cease to be amazed when we hear these stories of what has been made possible by a generous donor. We are proud to share three of these unique stories of accomplishment and possibility. Donna Pierce For decades, Donna struggled with a heart defect that prevented her from doing anything active. “I always had to sit on the sidelines watching my friends do things so easily that were so challenging for me. It was always a big frustration,” she said. She was kept waiting for a permanent solution for years. She struggled with even light physical activity, occasionally even passing out when she pushed herself past her body’s limits. Despite procedures to fix the problem, Donna and her doctors were waiting for the technology to advance for a transplant that would really make a difference in her quality of life.
Then, the technology finally came, as well as the donor heart valve she needed. Donna received a life-transforming heart valve from her donor, a 30-year old woman. She celebrated her 28th birthday in the hospital and for the first time in her life, felt confident that her physical achievement dreams might finally be possible.
limitations. She completed marathons, triathlons, and countless other athletic achievements before discovering CrossFit for the first time. Now, she is the co-owner of Arenal Fitness, a CrossFit gym in Baltimore, and finds great pride in helping others to achieve their goals.
It’s been sixteen years since then and there’s been no end to Donna’s aspirations. A few months after her transplant, she switched career paths to work in the fitness industry and help other people overcome their
“My donor has allowed me to live a life that I never knew that I could have; a life without restrictions.”
Left: Donna Pierce and her Arenal Fitness business partner/friend Lauren Bunney stop for a photo while snorkeling in Florida. Above: Donna sharing her inspiring story with Baltimore’s WJZ.
“It’s so amazing that through my own experiences I can relate to what [my clients] are going through and then try to help them overcome the fears that are holding them back. It’s so rewarding,” Donna said. Donna honors her donor every day, not only by living her own life to the fullest, but by helping others do the same. “My donor has allowed me to live a life that I never knew that I could have; a life without restrictions,” she says. “It’s because of her that I can do all these things that I never thought were possible.”
Gavin Class Gavin was a lineman for the Towson University Tigers in 2013 when he suffered a heat stroke at practice. He was rushed to St. Joseph’s Medical Center and eventually transferred to the University of Maryland Medical Center due to the severity of his condition. He was in a coma, his liver and kidneys failing; at one point his heart even stopped. Twice, his parents were told to prepare for the worst. Gavin needed a liver transplant to survive. Thanks to the gift of a 51 year old donor in Pittsburgh, Gavin is alive today.
“My donor made it possible for me to keep up my healthy lifestyle.”
there as an organ, eye, and tissue donor. In June 2016, Sinai Hospital in Baltimore became the first hospital in Maryland, likely the country, to utilize this technology on a donor memorial wall.
graduated from college and is working as a strength and conditioning coach with hopes of helping other recipients live healthy lives. In addition to his athletic endeavors, Gavin’s family said “thank you” in a big way, by providing a grant to The LLF to implement digital kiosks at Maryland hospital donor memorial walls. These kiosks educate, inspire, and enable users to register right then and
Gavin looks forward to what lies ahead and is eternally grateful to his donor. “My donor made it possible for me to keep up my healthy lifestyle. Not just that, he made it possible for me to live again! I owe everything to him and I thank God for him… I just want to live out every day for him, live life to the fullest, and not have any regrets.” continued, next page
Right: Gavin Class won gold medals in swimming and racquetball at the 2016 Transplant Games. Below: Thanks to a grant from the Class family, in June, 2016, the Sinai Hospital donor memorial wall became the first to feature an interactive kiosk that allows people to register right then and there.
Gavin surpassed many expectations in his recovery and made it his ultimate goal to be the first liver recipient to ever return to the football field. He was cleared to play, but Towson University officials were concerned about the safety of a transplant recipient on the field. Despite a legal battle, the courts agreed with the university’s decision, and Gavin’s dream came to an end. While it was disappointing, the outcome did not deter Gavin from moving forward in his athletic goals. He still had a drive for competition and worked hard to compete for Team Maryland at the 2016 Transplant Games. Gavin took home gold medals in swimming and racquetball. Today, he’s
What Did Your Donor Make Possible? continued Amy Sherald Amy is an award-winning artist from Baltimore, MD. In addition to her many other accolades, in March, 2016, she became the first woman, and the first African American, to win the National Portrait Gallery’s prestigious Outwin Boochever Portrait Competition. You would never know that just over three years earlier she received a heart transplant.
Amy had always had an irregular heartbeat, but never considered it could be something more serious until she was training for a triathlon. A check-up with her doctor revealed she was in congestive heart failure. Amy was told she needed to stop running. Her heart function was so low her doctor was surprised she even made it to the office. She continued on until one day, her heart function hit 5% and she blacked out in Lexington
Market. She was admitted to The Johns Hopkins Hospital and soon her situation was so dire, she was first on the list for a heart transplant. Thanks to her donor, Kristin, Amy received her second chance. Amy walked out of the hospital on New Years Day 2013, determined to begin her new life and not let a single opportunity pass her by. She started viola lessons, bought an $1,800 road bike in her new quest to become a competitive cyclist, signed up for Match.com, and returned to her love of running. She has also seen incredible success in her career as an artist, with work in the collections of the National Museum of Women in the Arts and the Smithsonian National Portrait Gallery, among many others. “I thank Kristin for every brush stroke in my paintings, for every breath I take on a run, and for each morning I wake up with a steady heartbeat. I thank her when my heart is overwhelmed with love. I know I wouldn’t be here without Kristin.” Every recipient finds happiness and possibility post-transplant in their own way; every recipient has their own unique story. But the one constant is the donor’s gift that can make anything possible. Top Left: Miss Everything by Amy Sherald, heart recipient and winner of the National Portrait Gallery’s 2016 Outwin Boochever Portrait Competition. Bottom Left: Amy at her studio residence at Creative Alliance in Baltimore.
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ten questions with... Sarah Gray Director of Communications, the American Association of Tissue Banks (AATB) For this issue’s “Ten Questions With,” we interviewed Sarah Gray, donor Mom, author, public speaker, and Director of Communications for the American Association of Tissue Banks (AATB). To learn more about Sarah’s story and her new book, A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science, please visit www.sarahgray.com.
How did you become connected to organ, eye, and tissue donation? I first became involved in donation when my infant son became a donor.
What made you decide to explore your son Thomas’ legacy? Our son was too small at birth to donate to transplant, but he was able to donate his eyes, liver and cord blood for medical research. I was curious about what it means to donate “to research.” I was hoping to be able to ask the researchers what it was they were studying when they requested my son’s tissue.
How did you and your family, especially your husband and your son, react to learning about Thomas’ impact? I was amazed and inspired and felt a human connection with the lab teams. My husband Ross reacted in a different way, through sports. He loves every sport, and now wears t-shirts from Duke and Penn (where Thomas’ donation was utilized for research) and roots for their teams. Callum, my son, is still too young to understand what medical research is, but he has developed a special relationship with the retina researcher, Dr. Arupa Ganguly. He sometimes asks me to email her “science questions” like “what is the smallest thing in the world?” They are pen pals.
What are a few of the ways in which Thomas’ donations are being utilized? Thomas’ corneas were studied to help find ways to regenerate lost corneal cells and restore vision. His retinas were studied to help stop tumor formation in retinal cancer.
His liver was studied to help find treatments for children with a fatal liver disease, Urea Cycle Defect, and his cord blood is being studied to help understand the condition he had—anencephaly.
How has your experience shaped your career? When you don’t get what you want, they say you get “experience.” Like many other professionals in this field, my personal experience led me to this field, and helps inform my work. I am now the Director of Communications for the American Association of Tissue Banks (AATB).
You’ve been featured on many various media programs, including CNN, NBC, TODAY, and NPR—do you ever get nervous telling your story? The hardest part is talking about the death of a child to a complete stranger. It’s a taboo topic and it makes people uncomfortable. I hope that talking about it can help break down the taboo.
What influenced your decision to write a book? As I visited different facilities and labs, I was interviewed by the media for a variety of articles. After a while, the story got longer and longer, and seemed more like a book than an article.
You have received rave reviews for A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science. Had you ever considered becoming an author before?
Photo: Mark Walpole
Probably like everyone in the world, at some point I have said I would write a book about something, but I never actually did it until now.
Congratulations on your new daughter, Jocelyn! How will you explain Thomas’ story to her, and how do you explain it to Thomas’ twin, Callum? Callum knows that he had an identical twin who died and we made a book for Callum to see photos of his brother. I imagine that when Jocelyn gets older we will explain it in the same way, and let Callum tell her in his way, too.
What’s one thing most people don’t know about you? I’ve been inspired to meet the people behind a variety of anonymous donations. For example, I received a blood transfusion in childbirth. I am making efforts with the blood bank to try to meet those people. When Jocelyn was born, we donated her placenta for tissue grafts and her umbilical cord for research. I hope to follow these donations. Also, my daughter received donated breast milk in the hospital. I hope to meet the donors of the milk, too or at least email them a thank-you note. It’s worth a try, right?
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