By Nancy De Los Santos
Special to the San Fernando Valley Sun/el Sol
The illness seemed to always be lurking near Carlos Arriaga’s life. It wasn’t center stage, but stood somewhere in the shadows. He calls diabetes the silent killer, “You don’t know how bad it is until it gets you. You feel great until you don’t.”
Diabetes had a foothold in his family, his mother was afflicted with the condition. Nineteen years ago, at the age of 44, Carlos was diagnosed with diabetes, but the doctors assured him he didn’t have to worry, and instead to just be careful with his diet.
He was careful. He ate well, limited alcohol to a weekend glass of wine, and exercised regularly, but diabetes still reared its ugly head.
Today, with a regime of dialysis three times a week and four daily medications, Carlos continues to work as a graphic artist and maintains his role as chief chef at home. His wife, Evette Vargas, a content creator and art activist, dreams of writing a screenplay where the perfect donor match presents itself and she and Carlos would once again dance the night away.
The couple met in New York City and shared a love for the salsa music of Tito Puente and Celia Cruz and all things creative. They moved to Los Angeles to pursue their dreams of creating television programs and movies that portrayed people of color. In early 2021, Carlos began to lose feeling in his left arm and experienced dizzy spells.
His complexion changed from a healthy olive-toned to a yellowish tint. The vision in one eye became blurry, and he often felt as if he was having a heart attack. COVID was at its height and Carlos wanted to avoid going to the emergency room, but Evette insisted. Restrictions kept her from entering the hospital, and while she waited in the parking lot Carlos called with the news, “It’s diabetes, and it’s got my kidneys.” With those words, Carlos began a long journey of dialysis and medications.
These days Carlos is under the care of the Connie Frank Kidney Transplant Center at UCLA. Three days a week he and 20 or so other patients with kidney disease sit in a nearby dialysis center for the procedure. Connected to a dialysis machine for 4 hours, the most he can do is listen to the swish-swish-swish-beep of his blood speeding through the mechanical contraption that removes toxins; a job that his kidneys used to perform. The hemodialysis machine drains the patient’s blood, then bathes it in a dialysate solution that removes waste substances. The clean blood is returned to his bloodstream.
“You’re sitting in a room with dozens of patients each in their own different stages of this disease. Some are just beginning, others are in the middle,” Carlos shares, “The ones who have been on dialysis for years, that’s a sadness you can feel.” During the hours-long process, patients may read, watch television, write, or even sleep. Always the artist, Carlos uses his time in the dialysis chair sketching, reminding himself to stay in a good mood, “I’m optimistic. I don’t know what’s going to happen, but I’ve got hope.”
That hope walks a tightrope. The best option for long-term survival is a kidney transplant. In California, the list of those in need of a donated kidney is ten years long. That’s ten years of dialysis treatments three times a week, every week. That’s ten years of wondering if there will be an available kidney that will match your body’s needs perfectly. Ten years of carrying a beeper, and being ready if and when that perfect match is found to get to the hospital in a four-hour window for the life-saving surgery.
The most common way donated kidneys are made available is from a deceased organ donor. This would be a person who died unexpectedly or from an illness that did not affect their kidneys. If that person is an organ donor, the donor system goes into effect to quickly find a match and have the procedure begin within a four-hour period. If the deceased is not a donor, a donation coordinator contacts a family member and explains the process. Too often, during this challenging time, grieving families cannot emotionally embrace the idea of allowing a donation.
The best manner in which to facilitate an organ donation is for a person to make the decision to become a donor while living. This is a relatively easy process in which one adds “Donor” to their state driver’s license or identification card and lets their family members know of their wishes. A person may also join an organized effort that coordinates organ donations, such as The National Foundation for Transplants.
The third avenue in which a person may receive a life-giving gift is through finding a match within their family or social circles and having that friend or family member donate one of their own two kidneys.
This is what happened to Alberta Cumplido, suffering from diabetes and on dialysis, who had two sisters who both volunteered to donate one of their kidneys to their sister. One sister tested first and was a match. There wasn’t any need for a second sister to test, but attending an orientation on living donors and learning of the shortage of available kidneys versus the enormous need touched her heart. Inez Gonzalez made the decision to donate one of her organs to a complete stranger by becoming a living donor. Two weeks after the surgery she said, “I feel great. The medical advances are incredible. I don’t need to meet the person who received my kidney. I’m just happy I became a living donor.”
Ms. Gonzalez believes that becoming a living donor is a very personal decision, “No one should feel pressured to do it, and not everyone has the privilege to become a living donor. There is no financial cost to the donor, but paid time off is essential for the many appointments and the recuperation. You need to be in good health, and be physically and mentally strong.”
Not everyone understands her decision, “A friend asked, why would God give us two kidneys if we don’t need them both? Simple, I answered, ‘it’s to give us the opportunity to save someone’s life’.”
Currently, over 90,000 people in the United States are on the national transplant waiting list for a donor kidney. The Donate Life of America Foundation is committed to increasing the number of lives saved with organ, eye, and tissue donations, and states that after a kidney donation, the living organ donor’s remaining kidney will enlarge, doing the work of two healthy kidneys.
By sharing his story, Carlos’ only hope is to place a spotlight on the great need for organ donors, “The more people who know that they can save a life, the better. The more people who know they can save a life even after they’re gone, by telling their loved ones it’s what they want to do, the better it will be for all of us on dialysis. We all just want a chance to live.”
Carlos may be reached at firstname.lastname@example.org