A difficult wait

  • Sunday, April 13, 2014

Lindsay Street/Gazette Thirty-year-old Ryan Wilson has end-stage renal failure. He is on dialysis five times a night and several times a day.

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For the past two years, a modest home near Westview Middle School has clicked, beeped, whirred and sloshed with noises five times a night, every night, and several times a day, every day.

“We’ve gotten used to it,” Amanda Wilson shrugged. She lives with her husband Ryan and two children, ages 7 and 10. The family expects a third child in August.

The machine inside the house makes the noises they’ve learned to live with — it’s the machine keeping 30-year-old Ryan Wilson alive.

The Wilsons have had a lot to get used to in the last few years since moving to Goose Creek, a move spurred by Ryan’s severe medical condition. He has Berger’s disease, also known as immunoglobulin A nephropathy. Simply put, Ryan has end-stage renal disease.

There is no known cause of IgA nephropathy. It’s suspected to be genetic, but no one in Ryan’s family has it.

The diagnosis came in April 2012 when the young family was living in Columbia. Ryan worked as a welder and, one day, he experienced heart palpitations on the job.

“My heart felt like it was going to bust out of my chest,” Ryan recalled.

As a precaution, he went to the doctor. There, medical staff uncovered some unexpected abnormalities in the otherwise healthy young man.

His blood pressure was 204/170 (normal range is usually less than 120/80). There was blood in his urine. And his waste levels were high.

“I still didn’t understand what was going on,” Ryan said.

Even medical staff seemed befuddled by the numbers. Amanda recalled a nurse telling them: “Something must be wrong because you have the kidneys of an 80-year-old.”

By June 2012, Ryan was placed on dialysis with stage four kidney failure. Since that time, he has visited the emergency room several times due to complications.

Ryan grew up in Goose Creek, and they moved to the city to be closer to MUSC. Ryan has been on the waiting list for a kidney for the last six months.

The average wait time at MUSC is two years. The national average is five years.

While the family waits, the noise of the dialysis machine in the house isn’t the only thing the Wilsons have adjusted to. They’ve also had to radically change Ryan’s diet to eliminate potassium and phosphorus — things that are regularly added to fast food items

“At first, it was really overwhelming,” Ryan said. But the family figured out how to keep him healthy.

Ryan can’t work due to constant dialysis, and Amanda works part time. But the couple hasn’t let the diagnosis and treatment bring them down.

“Ryan has a really good attitude,” Amanda said. “For the most part, he just looks at the positive side.”

“I find my strength in my faith in God. I have a lot of hope in God. I believe He’s going to answer my prayers,” Ryan said.

Both said the journey, though hard, has shown divine providence.

“Every step of the way, things have fallen into place in the right way,” Amanda said.

For example, if his kidney condition was discovered a year prior, Ryan would not have qualified for disability. And now they don’t have to pay too much out of pocket on their limited income.

It would also appear that his kidney disease, though discovered late, was not discovered too late.

“There were no symptoms,” Amanda said.

Ryan added that he did experience some headaches and loss of appetite in the months leading up to his diagnosis, but nothing that gave him too much cause for alarm.

Amanda said a routine health exam likely could have caught the disease earlier on and made it more treatable.

“I would encourage young people to get routine health exams. Seventy-five percent of people with this condition would never need dialysis (or a kidney transplant),” she said. “You have to be looking for it.”

For now, it’s a waiting game. No one is a candidate in Ryan’s family.

Kidneys from a live donor are preferred, because they last longer.

“If you can’t be a living donor, be a deceased donor,” Amanda said.

A few months after receiving a kidney, Ryan will be taken off of disability and can return to work. But despite Ryan’s readiness to return to the workforce, the family feels apprehensive about the move because the anti-rejection drugs are expensive. After the surgery, Ryan will also still have many doctor’s appointments and co-pays to finance.

To help with expenses after surgery, a fundraising campaign has been established through HelpHOPELive.org, a nonprofit that assists those post-transplant, in honor of Ryan.

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