Since 2003, April has been designated as National Donate Life Month, a time to celebrate the miracle of organ, eye and tissue donation and transplantation and honor the donors who have given the ultimate gift—the gift of life. There are over 114,000 people waiting for a life saving organ transplant and over 2,100 of them are right here in Louisiana. As a registered donor, you may be able to save and heal lives right here in Cenla.
Sharing the Gift
Many of those waiting feel like it is a miracle to finally get the call that an organ is available—but imagine if you found it was from someone you knew. “If I only had one word to describe my mom,” Jenna Foster said, “it would be exceptional.” Donna Reed was a beloved mother, wife, grandmother and science teacher for 32 years in Rapides parish. She was also a registered organ donor.
Donna’s daughters, Jenna Foster and Jessica Dubea, said their mother’s decision was partly because of her understanding and fascination with the science of donation, but mostly because of her strong Christian faith and giving spirit. Jessica and Jenna said Donna was their best friend, and went on to describe a woman it would be a pleasure to have had the opportunity to meet. They said she was kind, giving, patient and that she always led by example. “She was a woman of very strong faith, but she wasn’t preachy or judgmental,” said Jessica. Donna was known to say things like, “Some by blood and most by choice,” when she talked about family.
Jenna remembers her mom talking to her about donation when she turned 16 and was getting her license for the first time. It wasn’t a long conversation, but Jenna remembers her mom saying we won’t need our organs when we are gone, and wouldn’t you want to help someone else? That conversation influenced Jenna to register, too. Both daughters had no doubt what their mom would want when they realized she had the possibility to become a donor after a sudden brain bleed. What they didn’t know at that moment, was that Donna was going to give the gift of life to someone in her very own community.
Donna and her family were members of Philadelphia Baptist Church, and Pastor Philip Robertson had shared with his congregation that his father, Louis Robertson, was ill and in need a liver transplant. Jenna said it wasn’t until after they had started the donation process that she began to wonder if they could ask for Donna’s liver to go to Louis. They spoke to the organ donation coordinator who explained that you could direct who you wanted specific organs to go to, but they had to be a good match (blood type, size, etc.), and that it was very rare to be a match. Once they knew they could do it, they never doubted it would work. Jessica said, “A peace came over us, and we just knew this was what God wanted.”
After finding out that Louis was indeed a match, their dad, Marvin Reed, decided to jump on his motorcycle and head to Ochsner to be there when Louis got his transplant. The sisters shared that Mr. Louis was having a hard time accepting the gift, and having Marvin there calmed him and made him realize everything was okay. The transplant was a success, and Louis is still doing great. He and his family regularly check on the Reed daughters and their families, send cards on special occasions and always let them know they are thinking of them on the anniversary of Louis’s transplant. Donna was also able to help three other individuals through organ donation and many more through tissue and eye donation. To date, the family hasn’t had any contact with the other recipients, but hopes to one day hear from them.
Jenna and Jessica said stories of their mom’s quiet generosity continue to be a blessing to them. Jessica’s daughter, Hannah, wanted to try karate, so they went to Pine Forest Martial Arts. Her Sensei, Michael Veillon, pulled Jessica aside one day and said, “I know where I know you from; your mom was Donna Reed.” He proceeded to share an emotional story of how he was at a crossroads while attending Louisiana State University. Michael dreamed of joining the military, had recently found out he couldn’t due to a heart defect, and was at a loss with what to do with his life. Donna was attending continuing education classes at LSU and started talking to Michael in the cafeteria over lunch. She spent every lunch that week talking with Michael, and he credited Donna with helping him through a very rough time in his life. “I was alone at school and not sure if I wanted to continue my education in electrical engineering when I learned I couldn’t join the military,” said Michael. “She lifted my spirits and encouraged me to stick with it.” Donna never even mentioned it to her family. Jenna said that’s just the type of person she was, always willing to help others, patiently listening and offering guidance. In fact, so many people showed up at Donna’s funeral to pay their respects, they had to bring out two additional guest books for people to sign!
Why Should I Register?
Louisiana Organ Procurement Agency (LOPA) works with hospitals and families across Louisiana to help facilitate organ and tissue donation. The agency educates the public about donation and manages the Louisiana donor registry. According to polls, 95% of Americans support organ donation, yet only 58% have registered themselves as donors. Louisiana has 2.6 million individuals listed in our state registry, which is about 56% of our current population. If most Americans support donation, why don’t more of them register as donors?
“Although you can be a living donor for some organs, the majority of donations happen after death, and as a culture we don’t like to talk about death,” said Kirsten Heintz, Director of Communications at LOPA. Kirsten said another challenge is most people think they can only register at the OMV when they get their license. Louisiana recently changed to a six-year license cycle, with the option to renew online, so now you may only get asked once every 12 years. However, with today’s technology, it is easier than ever to register online at www.lopa.org, or you can even register in the health app on any iPhone.
LOPA works with donor families every day, and the staff hears over and over again how relieved family members are to know that their loved one made the decision to be a donor. Organ donation usually happens after a sudden, unexpected death. If that person has already shared their wish to be a donor, then it’s one less thing the family has to think about during such a loss. Additionally, many families say it was the one good thing to come out of their tragedy, a silver lining of sorts.
An easy way to help raise awareness during National Donate Life Month is to participate in National Donate Life Blue and Green day, which will be observed this year on Friday, April 12th across the country. During Blue and Green Day, the public is encouraged to wear blue and green, and use that outward sign as a tool to help start the conversation about the benefits of registering as an organ and tissue donor and to share stories of how the gift of life may have impacted your life or the life of someone you know.
The Growing Need
Dr. Trevor From, a noted nephrologist in Alexandria, is the vice president of LOPA’s board of directors. He has been involved in donation and transplantation for decades, even before the formation of LOPA in 1988. The national waitlist includes over 96,000 people in need of a kidney, according to unos.org, with more being added every day. Dr. From thinks that number continues to grow because we have gotten better at disease recognition and awareness, patients are getting better pre-transplant care and we continue to expand the pool of people who can safely get transplanted.
“Education is the key,” says Dr. From. “Kidney disease is often silent, so you need to know your own risks and get screened.” He said he often sees patients once their kidneys are already failing because they just didn’t feel that bad. “I frequently get referrals that are accidental findings,” says From. “The patient is going in for something else and their blood work comes back with extremely elevated creatine levels. They didn’t even suspect kidney disease.” He is also on the board of the Kidney Foundation and kidney.org, which works to educate communities about kidney disease and offers free screenings at events throughout the state.
Myths & Misconceptions
“One of the biggest misconceptions we hear in the community is ‘I’m too sick or too old to donate’,” said Heintz. “Many people remove themselves from the registry prematurely or don’t sign up at all. But organ donation has different criteria than blood donation or bone marrow donation, so we encourage everyone to register, and let medical professionals determine their ability to donate at their time of death.” According to Dr. From, in Central Louisiana, there seem to be more religious concerns. According to unos.org, almost all major religions support organ and tissue donation, but Dr. From says there are individual religious leaders who don’t support donation and are big influencers in their community. He credits the nuns at CHRISTUS St. Frances Cabrini for helping change perceptions in the early years and supporting families through the donation process. “But we still need more outreach in the smaller towns and rural areas,” he said.
Dr. From has also heard people say they don’t want to go to heaven with missing body parts or are concerned about being able to have an open casket funeral. “Donation will not interfere with having an open casket funeral,” says Heintz. “Donation is a surgical procedure, and the donor is treated with the utmost care and respect for the gift of life they are giving.”
“Another misconception we hear a lot is that medical professionals won’t try to save me if I have a heart on my license,” says Heintz. “TV shows frequently portray this mistruth because it makes for good drama, but in order to be an organ donor, you have to be cared for in a hospital and on a ventilator. After all attempts to save you have been exhausted, two different physicians have to perform a series of tests to declare brain death before donation becomes an option.”
The donor registry managed by LOPA is only for deceased donors, but some people are interested in become living donors, primarily kidney donors since most of us are born with a spare. Dr. From says he encourages all of his pre-transplant patients to try to find a living donor. “Patients who have a living donor do better in the long run,” says From. “Many patients do try to find a family member or friend willing to donate, but some won’t ask because they think the donor will be at greater risk. But their (the potential donor) risk is the same, whether they donate or not. In fact, you have to be heavily screened before you can donate.” Dr. From shared that he had a patient who lived 17 years with a kidney from her mom before she died from heart disease. Her mom is in her eighties now and still doing great.
There is currently not a state or national living donor registry. LOPA encourages anyone interested to contact the transplant center nearest them, or if it’s to give to someone they know, that individual’s transplant center. And living donors can stay on the donor registry, because there are other organs they can donate after they die.
A Living Legacy
Jenna says, “It was bittersweet; it’s hard. But once we knew she wasn’t coming back, we started thinking about what would mom want. We knew she would want to help others. So there was no hesitation, no question that she wouldn’t be a donor, because we knew that was exactly what she wanted to do. That was how she always lived, she lived her life to give.”
We encourage you to learn more about organ and tissue donation to see how you might be able to make a huge difference in the lives of others. A great resource is The Gifted Life podcast. The podcast includes entertaining and informative conversations about organ, tissue and eye donation and transplantation. You can also share your inspiring stories with the podcast crew by e-mailing [email protected] or calling (504) 648-3477.
If you decide to be a donor, register your decision at lopa.org and share it with your family. You never know who you may help, possibly someone right here in Cenla!