Taking Back Life

Giving Back as Much as Possible

*Raymond is a NxStage Patient Advocate

It was 1996 and Raymond was a couple of years removed from military retirement. He was living outside Phoenix, Arizona, had a great job, a wonderful new girlfriend, and a positive outlook for the future. He also had a nagging cough that wouldn’t go away.

Thinking he had bronchitis, Raymond visited an urgent care clinic. He was told his blood pressure was alarmingly high and he needed to get to the hospital immediately. An ambulance was called.

“I remember thinking ‘All this for high blood pressure?’” says Raymond.

By the time he reached the hospital, his blood pressure had spiked even higher. Blood work was done. Bad news came next. It was far, far worse than bronchitis. His kidneys had failed and he would need to start dialysis as quickly as possible.

“My first thought was ‘What on earth is dialysis?’” Raymond recalls. “The doctor was trying to explain, but all I saw was his lips moving. All I could think was ‘How much longer do I have to live?’”

New Love, New Outlook

After Raymond spent a week on hemodialysis at the hospital, his girlfriend Analyn came to pick him up. All Raymond could think about was the burden he would be on her. He figured would go back to live in his hometown of Charleston, S.C., and sort things out with his family nearby for support.

“I told her to drive me back home, that it wasn’t fair, that she needed to find someone else,” Ray remembers. “She said ‘No I think you’re a great guy and I wouldn’t abandon you anyway.’”

“That opened up my entire life, and I knew I couldn’t treat this disease with pity, that I needed to show the same stick-to-itiveness that she was showing, to pay her back,” he says.

Twenty-four years later, Raymond has kept his promise, and so has Analyn. They’ve been married 21 years and have a 15-year-old boy and a 12-year-old girl. Raymond has maintained his health, is extremely active, and heavily involved in family life and church. His story has many ups and downs, but the downs never kept him from getting back up.

Back and Forth, Down and Up!

Over the years, Raymond has experienced virtually every form of treatment for his disease – in-center hemodialysis (ICHD), peritoneal dialysis (PD), and a kidney transplant that lasted 5 years. When his transplant failed, he felt like he was out of options. Health problems made him unable to go back to PD, and he was ineligible for another transplant. He went back in-center.

Six more years passed. It was summer 2012, and Raymond was in the hospital with pneumonia. His doctor told him about something he’d never heard of before. Home hemodialysis (HHD) with the NxStage system. Raymond and Analyn decided to try it. They trained together, she as his care partner, and soon began more frequent therapy.

“We got through training and everything was great,” Raymond says. “I just felt a renewed strength and vitality. On the third day, right after I finished therapy, I said ‘I think I can go to the gym!’”*

Since starting HHD Raymond, at 52 years old, is a man on a mission. He stays on a strict schedule. He works out every day. A passionate cook, he makes nearly every meal for his family. He drives his kids to school. He also loves video games, spectator sports, and keeping up on current events.

“I look at it as I have to earn back those years when I wasn’t taking care of my body,” he says. “I feel like I need to make up for the years I lost. I made my daughter a promise to dance with her at her wedding. I’m not going to be in a wheelchair, I’m going to be the same fit father she’s always known.”

Putting Himself Out, Going All In

Beyond a dedication to his family, Raymond, along with Analyn, is doing everything in his power to tell others about his experiences.

Raymond is a Patient Advocate for NxStage and has traveled the country – with his dialysis machine – introducing dialysis patients to the potential benefits and other important considerations of more frequent HHD. One visit really hit home for Raymond, as he was dialyzing in front of 15 PD patients who had, like he once did, reached the end of their PD journey, and were looking for the next step.

“I speak to a lot of patients, and I hope that they will embrace this modality because it has the potential to help them gain control over their treatment and their life,” he says.

In addition to his work with NxStage, Raymond also volunteers with the National Kidney Foundation of Arizona to bring free kidney disease testing and education to low-income areas. Years ago, he participated in a fundraising event for the organization, a local version of “Dancing With the Stars.” Raymond was the first active dialysis patient ever to compete.

On a more personal level, Raymond and Analyn have dedicated much of their time and resources to educating people about the prevalence, and often invisible threat, of kidney disease. Statistics show that 37 million Americans (1 in 7 adults)1 have the disease and, like Raymond, many of those afflicted don’t even know, and don’t find out until it’s too late to change course.

In 2015, they started their own charity to spread hope and change the trajectory of kidney disease. They host and attend events to raise money and awareness, with the aim of “saving lives through awareness, prevention, and regenerative medicine.”

With Analyn as its CEO, the organization has produced a web site, Facebook page, a published book (1in9 Tribe: Kidney Disease Warriors Beating the Drum of Hope and Change) and is currently filming a documentary that follows the Scott family as they travel to community events across the U.S.

Lessons Learned, Changed Lives

Looking back, Raymond sees patterns, behaviors, and missteps that, had they been identified and addressed, could have changed his story; a diet heavy in red meat, years of unmonitored high blood pressure, and a Stage 3 CKD diagnosis he was never told about while in the Army.

“That’s what our mission is all about,” says Analyn. “If people are aware and know the risk factors, they may not have to go through the journey Raymond went through.”

Yet, regardless of the trials he’s faced, Raymond sees his experience in a positive light, because it helps him help others.

“He always says ‘This is my purpose in life,’” recounts Analyn. “’And I’d be willing to go back and do it all over again.’”


Not all patients may experience these benefits.
*Check with your doctor before starting any new activity.

 

References:
  1. Centers for Disease Control and Prevention. Chronic Kidney Disease in the United States, 2019. Atlanta, GA: US Department of Health and Human Services, Centers for Disease Control and Prevention; 2019.
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