Organ donation for Latinos isn't only a medical issue
Are you an organ donor? Have you thought about organ donation at all? It’s a heavy subject, especially when you factor in what it means: you die, you give your body parts to someone else -- it’s a very personal decision to make.
But, consider this: according to the California Transplant Donor Network, 18 people die every day while waiting for an organ transplant, and there are more than 20,000 people on the waiting list in California alone. Over one-third of those people are Latinos. Reporter Shuka Kalantari has the story of one man who discovered that receiving an organ donation was more than just a medical issue -- it was a cultural one.
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VICTOR ZABALLA: This is my favorite thing…
SHUKA KALANTARI: Victor Zaballa is playing a traditional Mexican drum in his San Francisco studio.
ZABALLA: You can actually play with your fingers…
Zaballa is an artist. His studio is filled with handmade drums – as well as other wooden and metal artwork he’s produced over the years. You can find his installations throughout the Bay Area, like at the street entrance to the sixteenth and Mission BART station, where arches of steel painted in rainbow colors replicate Mexican papel picado.
But recently, Zaballa hasn’t spent much time in his studio. A few years ago he started to feel sick. He was getting tired easily, and began dozing off on the road. Then one day, his vision began to blur, and he rushed himself to UCSF hospital to make an appointment with a doctor.
ZABALLA: I lost my sight and my blood pressure was too high -- I could actually hear the blood going through my ears. I asked the receptionist if I could get an appointment for this week, and she brought in a nurse, and the nurse checked my vitals, and she said, "You need a doctor, you don’t need an appointment." The doctor came right away, and he check me and said, "You need to go to the ER."
Zaballa was immediately swept away to the emergency room. His kidneys were failing. He was having a stroke.
ZABALLA: They told me, “You were really close -- close to die.” You know but they really saved me, and then they told me you're gonna have to start dialysis because your kidneys are not working.
Dialysis is a treatment that helps the body by performing the functions that a failed kidney can no longer perform. In addition to daily dialysis, Zaballa would have to get on the waiting list to receive a kidney transplant. His doctors also asked him about his family’s medical history. He didn’t know. Zaballa, who had moved to San Francisco in the early 1980’s from Mexico, had never discussed his medical history with his family. He called his father and asked him, “Did our family have any history of diseases?” His father said, “No.” Zaballa wasn’t satisfied and probed further.
ZABALLA: I called one of my four sisters, and she mentioned right away, she said, “Yeah, our mom was on dialysis,” and she took her to dialysis almost every day for a couple of years. And in her case, they started dialysis too late and she died. But my grandmother die of kidney failure and one of my uncles die of kidney failure, from my mother’s side. So I called back my dad and asked, “What happened? You didn’t tell me that.” And he said, “Well, it’s not something you really need to know.” And I said, “Yes, I need to know. I’m doing dialysis now!” I was very surprised when I called my family because they didn’t really want to talk about it. It was like something to be ashamed of, like denial.
Zaballa says if he had known that his family members died of renal failure, his stroke could have been prevented.
MARISA HEMENEZ: Well, being Latina myself, I’ve experienced that.
That’s Marisa Hemenez. She’s a family resource coordinator for the California Transplant Donor Network. Hemenez says her own mother never wanted to talk about her asthma problems because she thought her illness would make others thinks less of her.
HEMENEZ: I think that it stems from the fact that many people in the Latino community rely on their bodies for physical labor. And if you have something like renal disease, or hypertension, or diabetes that really takes away from one of your – from who you are. Your livelihood. You rely on your body to work.
Hemenez is one of the first people to come in contact with a family after a loved one dies. She provides grief support, even as she talks with them about the possibility of organ donation.
HEMENEZ: There is a limited amount of time, and normally the trauma for the family has happened incredibly fast for them. I think that once you engage them in a conversation and they learn the correct information about, there’s no disfigurement, or a family can still have an open casket viewing and no one will know that their loved one was an organ donor, or that their organs are not bought or sold. Those are some of the concerns in the community.
In 1990, less than one out of six organ donors in California was Latino. But in recent years that number has risen. Now, after years of outreach, over one-third of all California donors are Latino, making them the second largest donor group by ethnicity in the state. Hemenez says it’s been a matter of overcoming falsehoods.
HEMENEZ: Some of the misconceptions are that, "My religion doesn’t support organ donation, that it’s against my religion.” When in reality all religions – all major religions – in the world support organ donation. And in our community, especially the Latino community, Catholicism is one of the main religions. But both Popes – the previous Pope and the current Pope – have spoken about their support on organ donation. In fact, the current Pope has a donor card in his pocket.
Although the number of organ donors is rising among most ethnicities, there’s still a shortage.
ZABALLA: The last project I started working on was table. It’s gonna be like, four legs are carved like different fish...
In his Mission studio, Victor Zaballa tests out an old table saw that he hasn’t used in months. He says he waited seven years for a kidney transplant, and by then the daily dialysis had caused the veins in his arms to swell, making him incapable of producing his art.
One Saturday afternoon, he finally did get that phone call he was waiting for: he had a kidney donor. He rushed to UCSF Hospital, and got a transplant the next evening. Afterward, Zaballa wanted to get in touch with his donor family.
ZABALLA: I asked the social worker, I said, “Well, I would like to contact them and give them some art work.” Maybe a little piece of artwork is something stupid, but I would like to thank them. And she said, “You’re not really allowed to contact them directly.” Most of the families of donors don’t really want to get in touch.
Many donor families find it too painful to meet the recipients of their loved ones organs. But others find solace in meeting them. Jose Zaragoza of Manteca is one. His son, Mathew Zaragoza Van Gelderen, died after a helmet-to-helmet injury during a high school football game.
JOSE ZARAGOZA: My son was 16 years and 6 months and 23 days when he passed away. My wife and I, after we find out that my son was declared brain-dead, we asked the kids what we should do about the organ donation because they knew a lot and they told us, “Dad, if you donate Mat’s organs, he’ll probably be a hero one day.”
Zaragoza says he was reluctant, at first.
ZARAGOZA: I was really angry when they keep on asking me those things, like if I wanted to donate this and donate that, so I actually walked out of the room and went into the hallway. But now I see all those things really different.
Zaragoza eventually donated seven of his son’s organs, and that very concept made him curious about who the recipients were.
ZARAGOZA: I wanted to know if that person really survives. I wanted to know where my son’s organs were. I wanted to see if my son really would help somebody with the organ donation.
Zaragoza’s family did get to meet a couple of the recipients, including a man who received one of Matthew’s kidneys.
ZARAGOZA: He saw Matthew on the news also, all the way from Iowa. And of course he feels so bad that he’s still living, and Matthews not here. He says, “I would rather it be me.” But you don’t make the choice, I guess.
Victor Zaballa never met the family of his kidney donor; like many other donor families, they chose to remain anonymous. Still, he hopes to be able to send the family a piece of artwork one day.
ZABALLA: I was just so grateful. It is truly a second chance in life. Particularly when they told me I just had a few more months and they didn’t think I’m gonna make it. When suddenly you actually get a kidney, I just want to hug and kiss everybody.
More than 100,000 people in the U.S. are waiting for an organ transplant. The number of registered donors has grown throughout the years as myths have been debunked. But even though the number of organ donors is growing among most ethnicities, there is still a shortage of donors, and there are still many people like Victor Zaballa who wait years for an organ transplant.
In San Francisco, I’m Shuka Kalantari for Crosscurrents.
You can view a slide show of Victor Zaballa and his artwork at Shuka's web site.
This story was conceived and produced as a project for The California Endowment Health Journalism Fellowships, a program of USC's Annenberg School for Communications & Journalism.