For now, Veronica Candanoza can only give thanks to people she has never seen, or may never know. Somewhere, a still unnamed 14-year-old in San Antonio gave her the chance to begin her life anew.
“I’m going to go to college now,” she says. “I want to study to become a counselor, I want do counseling for people who went through what I went through.”
Candanoza, a resident of Edinburg, was diagnosed with lupus, an incurable autoimmune connective tissue disease that ultimately affected her kidneys. The disease caused her to endure dialysis for years while she waited for a suitable donor.
Her prayers were answered on June 30. With Hurricane Alex bearing down, and flights cancelled because of the torrential rain, a life-saving kidney had to be rushed by car from San Antonio to doctors at McAllen Medical Center
The transplant was an end to the years of getting up daily at 2 a.m. for dialysis, and then battling the hardest aspects of the disease. Hunger, anxiety and patience, which was the hardest of all, she said.
“I was scared at first, but I left it up to God, He’s the only one who knows,” Candanoza said. “Usually when I go through surgery I get all nervous, and this time instead I was just (calm).”
“Right now, I am looking forward to taking care of myself, first of all. I have to go to my appointments until the doctor clears me,” she said. “I have always wanted to travel, but I never got the chance because of my dialysis. Now hopefully I will.”
Thousands of patients in South Texas are currently waiting for their chance at a second life through organ donation, yet groups charged with the task are struggling to find people in the Valley who can help others like Candanoza live healthy lives.
Long held cultural beliefs in the Valley often make it difficult to find specific donors from the region, according to the Texas Organ Sharing Alliance (TOSA). It amounts to people in the area who are willing to get a transplant, but not willing to donate, according to Yolanda Montemayor, supervisor and manager for TOSA’s southern region. TOSA manages the distribution of organs, and helps to select which transplant center receives them, based on waiting times.
The Alliance works with area hospitals to educate those in the medical field and the community about organ donation. Part of the job, Montemayor says, is speaking with families and giving them the information they need to make a decision about donating.
A low consent for organ donation in the Valley does not affect whether someone ultimately gets a transplant or not, but rather puts the responsibility on other regions across the state more prone to donating, according to Montemayor.
“My experience has been that, for the people who have said yes to organ donation, it gives them something to hold on to, a legacy for their loved ones,” Montemayor said. “They know that because of their loved one, someone else is living. It gives something positive to hold on to saying ‘at least my son’s death was not in vain’.”
The high rate of specific illnesses, including diabetes in the Valley, makes kidneys the most needed organ for patients in the region. There are currently 5,000 people on the waiting list, and about 90 percent are waiting for kidneys, Montemayor said.
The problem is compounded by a culture with misconceptions about organ donating, according to Montemayor. To talk about death or end of life issues typically means we are going to end up dying sooner according to the culture, she said.
Others say they don’t want to donate because “they want to go whole, the way God put them here,” which puts the region at odds with others in Texas, Montemayor said.
“What we find is that a lot of the families here don’t talk about it. They don’t talk about organ donation. So when we go and talk to families 30 minutes after somebody has died, most of the time what we are hearing is that ‘oh, we have never talked about that’, so they can’t make the decision for that person,” Montemayor said.
“I mean, we talk about wanting mariachis at our funeral, and even though that’s an end of life decision, for some reason organ donation is very taboo,” she said. “In the Valley, people are willing to get transplanted, but they are not willing to donate, and that’s something I don’t understand.”
Patients are put on a waiting list for a transplant determined by the severity of their illness. United Network Sharing, which is run by the federal government, requires every potential patient to enter into the network before a transplant can be made.
“Nobody get transplanted unless they’re on that waiting list,” Montemayor said. “The No. 1 person, and that’s usually the sickest person, is usually how they’re designated on the waiting list.”
Texas is divided up into what doctors informally call ‘organ districts’. Austin, San Antonio and McAllen each belong to the same district, and every city that has a transplant center has to contract with an organ bank.
“If someone is in a car accident, for example and is admitted to the hospital and turns out to be brain dead, then TOSA will send people to approach the family and ask them if they would be willing to consider organ donation,” said Dr. Charles Moritz, a transplant nephrologist at McAllen Medical Center.
“Once that is agreed upon, then TOSA starts managing that patient until the organs are harvested,” Moritz said. “Everybody is on a UNS waiting list, and once we report a kidney then we report to UNS, and they will kick out a list of patients basically saying who’s up first. So you look through the list, and you find out who’s on it to basically find out if you have any or no chance of getting that kidney.
“TOSA, when they generate that list from UNS, will let us know where we are on that list and which patients on our list are up for it,” Moritz said.
The minimum waiting time for a transplant in South Texas is 4 to 5 years. Candanoza said she prays for all patients who are faced with a long wait for a transplant.
“I want to tell them to never give up. There’s a God that will help you. There’s always hope,” Candanoza says to transplant patients.”
Anyone seeking more information, or is looking to become a donor may go online to donatelifetexas.org for more information.