Pandemic-Era Heroes: Kidney-Disease Patient Advocate's Role Grew More Challenging Amid the Outbreak
For many years, Carolyn Urquidez and her volunteer team have been on the forefront of educating the public on kidney disease before the diagnosis became a household term.
Having chronic kidney disease and requiring dialysis puts a person more at risk during these coronavirus times than the average person. Add age to that scenario and the situation becomes more dire.
Dialysis is a treatment that takes over kidney functions if those organs stop doing their job.
Treatment requires a visit to a dialysis unit three times a week at minimum and other than that time out of the house, most patients remain shut-in.
Advocate Carolyn Urquidez has been working with kidney disease patients since 2008, but with the onset of the coronavirus it becomes more challenging for her and her team of volunteers.
“The biggest challenge during these past months is to get to the patients, connecting with the patients” said Urquidez, the unpaid co-founder and CEO of San Fernando-based Kidneys Quest Foundation. “Now since they are high risk, they definitely can’t go out except for dialysis treatments. The obstacle is connecting on a personal level, which we have always done in the community but with the coronavirus it made it harder because people are staying at home. So, with that I need like a team to help me teach everyone to get online, to get virtual because not all of these patients are phone savvy or familiar with a computer.”
For many years, Urquidez and her volunteer team have been on the forefront of educating the public on kidney disease before the diagnosis became a household term.
Kidneys Quest Foundation is a non-profit outreach organization dedicated to families and individuals with kidney disorders throughout several regions in Southern California and the worldwide renal community and relies on the kindness of volunteers and financial benefactors to advocate for kidney disease patients and offer programs and support to them during their journey to wellness.
Because of the coronavirus the foundation, which soon plans to go international, also finds itself in a precarious financial position.
“Just when kidney disease was getting recognized, we had a lost opportunity for funding,” Urquidez said. “It turned around because of COVID and left us in a hard area and we can’t do fundraising. Our biggest need is (larger facilities) and benefactors, so we can keep us going in the community.”
The nonprofit foundation, dedicated since 2008 in helping renal disease patients and their families deal with the challenge of chronic kidney disease and kidney transplants, is more of a resource, navigating and helping patients take that next step through their treatment programs.
“When someone gets diagnosed … you have a thousand and one questions and you get only so long with the doctor and you leave not knowing exactly what and where and when it’s going to happen and what you have to do next,” said Urquidez, who has a degree in healthcare management from UCLA. “So with that this is why, me being in the health care sector for 38 years, I took the initiative to make it easier for people when they do get diagnosed because it was a challenge in 2000 for myself when my ex-husband got diagnosed. And there were no answers as to what to do next at that time.”
One of the goals of the foundation is education through weekly meetings and support groups.
“We do a lot of education because education is a key in knowing about the condition, they get more confident, they get more relaxed because of the fact that they know what’s going on and what takes place and what choices they have,” Urquidez said. “Our goal is to find them their resources, how do you find a transplant team that would accept them with this type of insurance, how can they stay active, how can they not have a hardship. This is where we come in and help.”
Kidney patients normally have heart diseases or other medical conditions, so they can’t be in supermarkets, get their medications. They need to use delivery services but not all can afford that.
“So, we are delivering,” Urquidez said. “After the first crucial months of April and May, we were picking up prescriptions for them or whatever we could do that would have cost them money.”
During June, the team went to dialysis units and delivered 2,516 kits that included cloth masks, hand sanitizer and a pair of gloves and conducted surveys.
“Ninety-five percent of patients did not have a cloth mask,” Urquidez said. “They only had a mask given, thank God, by the dialysis unit and they kept that same mask until they came to get dialyzed again and that was two days later. So was it a big need? Absolutely. We are still delivering masks by mail as they need them, because we still have cloth masks coming in.”
The foundation also helps getting patients on a kidney transplant list and keeping them on it while offering support through various stages.
In the past 13 years, they helped 75 patients maneuver their way through the transplant progression.
Melissa Calderon, a Santa Clarita resident, and her mother, Reynelda Calderon, 60, who was on a transplant kidney list for two years, were facing a 5 p.m. deadline this summer because of an insurance mix-up.
They know first-hand about Urquidez’s passion for the kidney disease patient.
When Urquidez learned about the dilemma, she came to the mother’s rescue, spent half a day on the phone with Medi-Cal to ensure the transplant would take place and impressed the daughter so much that she is now one of the volunteers at Kidneys Quest Foundation.
“Thanks to her, my mom was able to receive her transplant, otherwise she would have missed out on a big opportunity,” Melissa Calderon said. “I’m a volunteer because I want to be able to help her for all she did for us. It’s important to know someone is out there, and they have our backs especially with insurance nowadays, it is a complicated process. It’s good to know the foundation is always there and looks out for us if there are any issues or obstacles.”