Black History Month
Decades of Appreciation and Respect
Charles Okeke’s first heart transplant gave him 10 years of life before his body began rejecting it. The antibodies that caused his first heart to fail would not allow for another transplant right away, and Okeke eventually became the first person in the U.S. to be discharged from the hospital with an artificial heart. That technology gave him the freedom to return home to his wife and three children until his second heart transplant, which came in January 2011.
This time, he also received a kidney from the same donor, because his kidney was damaged during the wait for a new heart. Thanks to this dual lifesaving transplant, Okeke’s quality of life dramatically improved. He celebrated 10 years with his second transplant in January 2021.
“There are no words to express my appreciation and respect for the family that made the courageous and generous decision to donate their loved one’s organs,” says Okeke. “I honor them and I am keeping my pledge to continue honoring and taking care of this great gift.”
Happy Valventine’s Day!
We are pumped for Valventine’s Day! Are you?
On Feb. 14 we’ll be celebrating National Donor Day. This is a time to focus on all types of donation, which can save, heal and renew the lives of so many. We recognize how organ, eye, tissue, blood, platelet and bone marrow donations all play a role in healing and saving people in Arizona and across the country and the world.
Here at Donor Network of Arizona (DNA), we affectionately call it Valventine’s Day to emphasize the impact donated heart valves can have. Heart valve transplants go to pediatric patients more 76% of the time. It gives them a second chance at life even before their lives truly get started.
His Golden Heart
Julianne Orren says the biggest question she has ever been asked is “Will you consider donating your son’s heart valves?” Little did she know that the effect of her quick “yes” would be the thing that carried her through one of the most difficult times of her life.
Once born, “Nate the Great” would not be able to survive long in this world, and after a short, precious time with his family, he went on to be a heart valve donor and a hero.
“Giving heart to the world is the only thing in all the string of change that this loss brought on that made any sense!” says Julianne. “That night, Nate the Great became a hero to two families and their babies who received part of his golden heart.”
Hearing that Nate’s donated heart valves had saved two other children gave his family a silver lining of hope.
“[Fifteen years ago], two phone calls were placed to parents who had babies with hearts that needed a new valve to save their hearts from needing a transplant in their future. I have imagined these parents answering these calls with the summons for transplant surgery that night. Elation, nervous fear, tears, calling of support, kisses and hugs, relief all wrapped in a blanket of hope and incredible gratitude. Each knew what available valves meant to another family and I have huge compassion for that knowing,” writes Julianne in a post honoring Nate on Facebook.
Arizonans’s Generosity Has Not Wavered
Tragic and world-shifting events in 2020 offered unique challenges, but “Arizonans’ generosity has not wavered” says Tim Brown, DNA’s president and CEO.
DNA recorded the highest number of heart valve donors for a single organization in United States history last year.
Join us as we celebrate Valventine’s Day and in honoring all our donors from 2020, a remarkable year in sharing the gift of life!
Organ, eye and tissue donation workers qualify for COVID-19 vaccine
Some employees from Arizona’s federally designated organ procurement organization qualify for the COVID-19 vaccination as the state continues its rollout in phase 1B.
Organ, ocular and tissue recovery has continued in Arizona, even in a global pandemic, contributing to the 10th consecutive recording-breaking year of the number of organ donors and total organs donated in the United States.
About 60% of Donor Network of Arizona’s (DNA) staff works in clinical or on-site roles with the mission to save and heal lives through donation and transplantation. DeAnn Padilla, an RN and organ recovery coordinator with DNA, said as more of the team gets vaccinated, it’ll offer some relief in an already high-stakes job.
“I think the positive side would be the fact that we feel protected,” said Padilla, whose job requires on-site work. “Our hospital partners are going to see that we are doing what’s necessary to continue to provide the care that donors and donor families need.”
Recovery staff can perform some of their duties on DNA’s main campus in Tempe, Arizona, but much of the organization’s work is done at hospitals across the state: Organ recovery takes place in a hospital, DNA coordinators work with hospital staff to facilitate the logistics, and—at least under normal circumstances—a team dedicated to the families of deceased donors support them through the process. Hospital visitation changes, among other coronavirus-related restrictions, have changed much of that, according to PJ Geraghty, vice president of clinical services at DNA.
“All of us who talk to families would say that being present for them in this crisis time of their lives—the death of a loved one—is one of the most important things that we do,” Geraghty said. “We can’t be close to families because of the risk of coronavirus transmission. That makes it harder for everyone.”
Harder because many of these difficult conversations now happen over the phone, instead of in person.
The DNA team anticipates eventually bringing back more face-to-face connection to the gift of life by meeting with families to explain personally how their loved ones are heroes for sharing such a gift. Until then, they plan to continue jumping the hurdles because the nearly 110,000 people on the national organ waiting list are counting on them.
More information: Arizonans can join the DonateLifeAZ Registry when they apply for or renew a driver’s license or state ID at an ADOT MVD office. They can also register online at DonateLifeAZ.org.
LifeSaver: Leslie Brown, RN, Banner – University Medical Center Tucson
An Arizona native, Leslie Brown played softball for Desert Mountain High School in Scottsdale. The prevailing spirit of teamwork she enjoyed so thoroughly as a teenage athlete ultimately led her to a career in health care.
Today, Brown is a mother of two and an RN in the emergency department at Banner – University Medical Center Tucson. She also sits on the Donor Collaborative Committee as a liaison between the emergency department and Donor Network of Arizona (DNA).
Brown provides notice to all staff in her department to make sure the entire unit is aware and prepared to make a referral call if all lifesaving efforts fail for a patient in their care. She even created a board in the breakroom to display donor outcomes with hospital staff.
Last year, in the early stages of the COVID-19 pandemic, she helped preserve an opportunity for an unstable patient whose family was passionate about donation and insisted he be able to donate should he not survive. This ended up being a rapid donation after circulatory death (DCD) case. Brown kept DNA updated by phone until our clinical staff could arrived. This donor saved the lives of two others through kidney donation.
On behalf of donor families, donors and recipients, thank you, Leslie! Your collaboration and commitment to making the most of life through organ, eye and tissue donation is an inspiration to all of us at DNA.
Donation Champions Awards
Illuminating Generosity – A Virtual Celebration of Life
“On a normal day, we would be welcoming you in person. We would be listening to you, we would be looking into your eyes, we would hear your stories of your loved one,” says Marcel Pincince, director of Donor Family and Advocate Services at Donor Network of Arizona (DNA). Due to the global pandemic, DNA took our annual Celebration of Life event virtual.
Despite the lack of an in-person audience, this beautiful event created a space for honoring 2019 donors and connecting with others who share a similar journey. Donor families came together in the live chat and comments, sharing about their loved one who gave the gift of life and healing. The theme, Illuminating Generosity, reflects what we hope donation can mean for all our donor families – a light in the darkest of times.
Sammy’s Light Shines On
That’s certainly how the Willmott family sees it. Sammy Willmott passed away at just 16 years old and became an organ and tissue donor. Now Sammy’s bright light continues to shine on in the lives of the four people he saved through organ donation and the many more he healed through tissue donation. It is no wonder that Sammy’s parents, Jennifer and Ken, and his two older sisters, Sienna and Savannah, are so proud of him. Sammy was very loving and compassionate, and he spent his whole life helping others. Thank you to the Willmott family for sharing Sammy’s story during Illuminating Generosity.
Their Special Hearts
Thanks to the generosity of donors like Sammy, the Siqueiros family has had more time all together. Two-year-old fraternal twins, Jason and Jaxson, as well as their older sister, 4-year-old Isabel, were all born and diagnosed with cardiomyopathy at a very young age. Isabel, two years ago, got her second chance of life through a heart transplant. Jason Jr. also received his gift of life earlier this year. As we were following the family through their journey, a call came through, an answer to their prayer, which they now call Jaxson’s special heart.
“I’m just forever grateful, eternally in debt to these families,” says Sara Siqueiros during the Illuminating Generosity event. “And I pray we get to meet at least one, someday…I don’t understand how my family got so lucky. There’s not even words I could ever come up with to describe how grateful we are to these families who chose to donate life. They’re just forever a part of my heart, my children’s hearts.”
Watching In Honor Of…
During the ceremony, we were touched by the remembrances donor families shared in the comments and chat. One viewer said, “Thank you for such a beautiful, thoughtful presentation. Although you may have wished the presentation to be in person, I appreciated being able to view from home…my remembrances and tears in private solace. Marcel, your calm yet expressive voice to our pain is like a soothing balm. Thank you again.”
We hope that if you haven’t yet had a chance to watch Illuminating Generosity, you will join us now by clicking here to watch. As part of the ceremony, we invite you to light a candle to honor everyone you would like to remember, so please have a candle nearby for that part of the tribute.
Celebrating Breast Reconstruction Awareness (BRA) Day
Today we celebrate Breast Reconstruction Awareness, or BRA Day! This national initiative started in 2011 to promote education, awareness and access to information regarding post-mastectomy breast reconstruction.
Breast cancer is the most frequently diagnosed cancer among women. For women who have undergone a mastectomy, psychological distress is not uncommon. Breast reconstruction can often be a step to healing. There are now many options available for breast reconstruction after a mastectomy, including reconstruction with implants using donated skin or tissues from a person’s own body. One skin donor can help more than five women undergoing breast reconstruction surgery.
Renewed Strength and Grace
Donor Network of Arizona (DNA) employees virtually came together to hear the incredible story of Naheima Sears. In 2018, Naheima’s doctors discovered two aggressive tumors and began treatment. After months of chemotherapy and immunotherapy, she was declared cancer free. Naheima opted to have a double mastectomy, and received tissue from a donor during her reconstruction.
She wrote to her donor’s family to let them know what their loved one’s gift meant to her.
“I had cancer and needed skin for a chance at living fully. Your loved one gave me that chance, selflessly. I am so immensely grateful…It is my hope that this note warms your grief, knowing that your loved one saved many lives, including mine. I have so much gratitude and so much love for what you did.”
Naheima is back to her active life of surfing and credits her donor with this renewed strength and grace.
Here at DNA, we recover and provide full thickness skin, which can be used for mastectomy reconstruction. This breast reconstruction surgery can empower women who have faced or are going through a breast cancer diagnosis.
DNA employees also shared their own reasons for celebrating BRA Day. One post honored their mom as a breast cancer survivor and shared, “I have never taken for granted the big or small milestones my mom has been there for. She has taught me so many lessons through her positive attitude, and she is truly one of my best friends.”
Happy Mother’s Day!
This Mother’s Day, we are thanking all the mothers who have said “yes” to birth tissue donation.
Through Donor Network of Arizona’s (DNA) birth tissue donation program, birth tissue (placenta and umbilical cord) can become a priceless gift with the potential to aid in the healing of multiple or various types of surgical procedures.
The placenta is the surrounding membrane that provides nourishment to a baby. After a scheduled c-section, the placenta is removed by the physician. The placenta, which is normally discarded at this time, can be used to help others with the mother’s permission. The decision to share this gift to help others does not affect the health and safety of the mother or baby.
In the video below, hear from DNA employee’s very own birth tissue donor, Neqwa Hill. Neqwa, a clinical information specialist at DNA, was a birth tissue donor when her baby girl, Arya, was born last year.
Neqwa and Arya’s birth tissue was one of the 54 successful DNA birth tissue donations in 2019, which was also the first full year of the birth tissue donation program.
We honor the mothers who have chosen to not only bring life into the world but share it with those in need. Happy Mother’s Day!
Hope over Fear | How the family of a young organ transplant recipient is facing a global pandemic
Photo: Heart recipient Oliver Crawford with a photo of Myles, his donor.
Because Oliver Crawford received his lifesaving heart transplant at just 6 days old, his family is taking extra precautions to keep him safe during the global COVID-19 pandemic.
Since his transplant, 5-year-old Oliver has been taking anti-rejection medication, which suppresses his immune system. This means that he can get sick easily, and he’s at higher risk for complications—even the common cold could require him to need oxygen support.
Oliver is high risk for contracting coronavirus.
“As a parent you just want to protect your child from everything,” says Oliver’s mother Caylyn Crawford. “So, it’s scary. Absolutely terrifying.”
Because Oliver has been immune suppressed his whole life, the Crawford family has always had hand sanitizer and disinfectant wipes on hand. But with the recent lack of supplies, Oliver’s family is concerned for his health more than ever before.
Thankfully, the quality of Oliver’s care has not been affected by the pandemic. This January, Oliver underwent a procedure to check for organ rejection. Because this procedure showed he is stable, Oliver can wait a few months between appointments with his transplant team. His mother says she is noticing more doctors begin to check on patients via video and phone calls and prioritize patients whose care cannot wait.
Despite all of the uncertainty in this time, the Crawford family is doing what they can to keep each other safe. This means washing their hands, showering and changing clothes when they get home to limit the number of contaminants entering the home.
“We are just trying to take all the precautions we can, because I don’t want to find out what it would be like if we didn’t,” says Caylyn.
So, the next time you find yourself stocking up on supplies, think about the people who need them the most during this time. You can help keep people like Oliver safe during this time by washing your hands, staying inside, practicing social distancing and covering your cough or sneeze with the inside of your arm.
Oliver got the chance to live a normal and healthy childhood today because an organ donor saved his life. You can sign up to save and heal others as well. Just visit DonateLifeAZ.org. It only takes 38 seconds, and there are no age limits or health requirements to register.
Find more information on COVID-19 from the Centers for Disease Control and Prevention.
Hope In Challenging Times
“Oh. That’s cool!” That was Kwentin’s only reaction when he learned his sister had registered as an organ, eye and tissue donor when she got her driver’s license in December of 2019. His mother, Cecilia, describes him as “a boy of few words.” But that short family conversation about the gift of life helped her family make the decision to donate after Kwentin sadly passed away.
“I think we’ll be asking why for a very, very long time,” Cecilia says, explaining her family’s grief process. “It doesn’t make any sense to us. It doesn’t add up.”
Working through such a sudden and confusing loss, Cecilia says she finds hope and relief in knowing something good could come out of her family’s hardship.
“We know someone else gets to hug their loved one, or see their loved one, for one more day,” she says. “To give someone hope when we felt hopeless—that helps us cope.”
Honoring Kwentin
While Kwentin never wanted to be the center of attention, he always tried to make everyone feel loved and included. His mom says he was the first to protect his classmates from bullies and was swift to deliver a joke to diffuse a situation.
The sports-loving bass guitar player grew up with the support of his neighbors and friends in the small town of Duncan in Greenlee County near the Arizona-New Mexico border. Even Sheriff Tim Sumner was present during a socially distant honor walk for Kwentin.
“It was just beautiful how much they went above and beyond to make sure he was treated like a hero,” Cecilia says about the staff at Banner – University Medical Center Tucson who helped his donation case happen in the middle of the coronavirus pandemic.
An honor walk typically has hospital staff line up shoulder to shoulder along the path to the operating room. In a time of COVID-19, this honor walk had one stark difference—everyone standing 6 feet apart.
“They still did a good job abiding by the restrictions but still honoring Kwentin as much as they could,” Cecilia says. “They had the biggest hearts and compassion in supporting us. It was amazing.”
Click here to watch Kwentin’s honor walk.
Kwentin’s sister, Katriella, wears a donor hero cape as they escort Kwentin to the operating room for lifesaving organ and tissue recovery at BUMCT.