Love Doesn’t Always Come in the Shape of a Heart: Celebrating Kidney Month
“It took me a whole three seconds to say, ‘Yep, we’re going to do this,’” says Bobby Zavala as he recalls his decision to test if he could donate a kidney to his brother. “That’s what you do for your family because you love them.” Those three seconds meant 18 more years that his brother, Ernie Zavala, would live a normal life.
“He was able to watch his daughter turn into a teenage girl and a woman. He was around for those formative years,” Bobby Zavala says. “He was able to spend another 18 years with his wife. That wouldn’t have been possible without the donation because they had just gotten married prior [to his illness].”
Bobby Zavala, now a senior director of admissions with the University of Dubuque’s campus in Tempe, says his family never had prior discussions about organ, eye and tissue donation. However, he was familiar with the topic as an Army veteran since discussions about end-of-life decisions are required before going on deployment.
“Those are the things we had to deal with if we didn’t make it back,” he recalls. “The Latino culture does not have this as a common topic of conversation. I truly wish we would more though.”
DONATION IS A TWO WAY STREET
The organ, eye and tissue donation conversation for the Zavala family, though, didn’t end at Bobby Zavala helping to extend his brother’s life through transplantation. Some may call it kidney karma that a generous ocular donor offered the gift of restored vision to Bobby Zavala’s daughter, Rhegan Zavala, who lived with corneal blindness for a few years until her cornea transplant in 2015.
Two recipients and a living donor in one family. Bobby Zavala says his faith, and that of his family, helped them get through such difficult times, especially after Ernie passed away almost two decades after his transplant surgery.
“If I said it was easy, I’d be lying to you,” says Bobby Zavala. “I continue to have faith, press forward, ask for guidance, and never give up.”
What Bobby Zavala also does not want to give up is the importance of donation within the Latino community. He fears some may not prioritize the topic until it hits close to home.
“There are people out there who are missing out on life, waiting for a new opportunity to live their life normally again,” he says. “You can change a life and you can save a life.”
Currently, there are about 110,000 people on the national organ waiting list. More than 90,000 of them need a kidney donation.
WAITING TAKES A VILLAGE
“He’s an 11-year-old boy and completely isolated. He’s been going to the hospital his entire life and spends 11 or 12 hours a day connected to a [dialysis] machine,” says Sierra Kolomitz, mother to Tristan Black, who after years of health battles was recently added to the national organ waiting list. More than a decade of kidney complications means Tristan has never had a “normal childhood.”
“He can’t swim. He can’t eat food kids enjoy like cheese sticks or spend the night at his friend’s [house],” Sierra says, explaining that she feels she has to do everything to protect her young son whose health is fragile.
When he was only 17 months old, a high fever and the eruption of a rash prompted Sierra to take her son to the hospital. It was supposedly the flu, she says, but after a week without improvement, she took him back.
Midaortic syndrome is a disease that affects the aorta—the heart’s largest blood vessel. It took doctors more than three years to determine this ailment was the cause of Tristan’s poor kidney function and high blood pressure that caused those other issues at such a young age. While this disease is very rare, Sierra was relieved to put a name to the problem.
“We went the first three or four years not really knowing,” she explains. “What is his diagnosis? What is this going to entail for his life? We finally have a care plan.” A care plan, which for now involves dialysis for the 11-year-old. But dialysis is a kidney function therapy, not a long-term solution.
Phoenix Children’s Hospital added Tristan to the national organ transplant waiting list in March 2021. Tristan is now eligible to receive a matching kidney donation from a deceased donor. Sierra, an RN and former dialysis technician herself, knows the wait could be lengthy, but they have a whole community of support in their small town of Winslow.
Friends and family have already stepped up to see if they could be living kidney donors to save Tristan’s life. They say it takes a village to raise a child; it may also take a village to save a child, “and we have a great village,” says Bobby Kolomitz, Tristan’s stepfather.
“I tend to stay on the optimistic side,” says Bobby Kolomitz. “I just stay hopeful, but I know never receiving a kidney is a possibility.”
While they wait and pray, Sierra and Bobby Kolomitz work to keep a big smile on Tristan’s face because, “We’re lucky he is who he is. He’s the strongest person I’ve ever met in my life,” says Sierra. “There’s definitely a higher power that is pulling the strings, which is why he is still here today.”
To learn more about living donation, contact one of Arizona’s organ transplant centers. To join the DonateLifeAZ Registry for deceased organ, eye and tissue donation, visit DonateLifeAZ.org/register, or check the box when you obtain or renew a driver’s license or state ID.
Thank you to Justin Lum from FOX10 Phoenix for sharing Tristan’s story. Click here to read.
Why Isn’t Everyone Automatically An Organ, Eye And Tissue Donor?
An opt-in system versus having to opt out
The opt-in donation system asks people in the U.S. to record their choice as an organ, eye and tissue donor. In Arizona, the DonateLifeAZ Registry hit a milestone by totaling more than 4 million registered donors in 2020. With the current opt-in system, the U.S. has one of the highest organ donation rates across the globe, with data showing the U.S. in the top five in the world in donors per million population. But why not an opt-out system instead in which everyone would be a potential donor?
Our system differs from the opt-out system some countries use, most notably Spain. By opt-out we mean the legal authority to recover organs from a deceased donor unless the person registered a refusal. It otherwise assumes a person agrees to organ donation.
For the U.S., the opt-in system works best and often outpaces countries with an opt-out system. There are 58 organ procurement organizations (OPOs) that service the U.S. and its territories. The top 12 of those U.S. OPOs—roughly one-fifth of the system alone—have more donors per million than all of Spain. Also, Spain’s high donation rate itself was only realized 10 years after the adoption of the opt-out system because it based many of its hospital strategies on the U.S.’s already established system. So, why do they need those strategies if everyone is already supposed to be a donor?
Your Decision to Register versus Family Authorization
While countries with an opt-out system appear to have less obstacles by not requiring their people to register, they do not act on an individual’s donor status as authorization for donation. These nations still require a family’s consent in addition to opt-out authorization. Spain’s system is better understood as a “presumed intent” system but not authorization. Donation conversations with donor families are still required before proceeding, which don’t always lead to saving and healing lives.
For context, cases in which Donor Network of Arizona (DNA) require next-of-kin authorization for donation to occur with donors who did not previously register, families decline donation an average of 54% of the time. That means donation would potentially decrease in Arizona if it were to rely on family consent—albeit a determination we accept with respect—rather than a donor making their own legally binding decision to offer the gift of life.
In the U.S., the decision to register as a donor cannot be legally overridden by anyone other than the registered donor. It is considered an end-of-life decision, much like a will. Also, under the current system, DNA can contact a potential donor family for authorization if legal next-of-kin finds that being a generous donor matches their loved one’s values if that person were not already registered. In Spain, documentation of refusal means legal next-of-kin can never be contacted. Therefore, by law, zero potential for donation exists in such a case.
The opt-in system is based on the Uniform Anatomical Gift Act (UAGA), first adopted in 1968. This system is founded on our country’s values of individual rights, autonomy and choice. Organ, eye and tissue donation is an end-of-life decision we respect, even if sometimes the answer is no.
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!