By Wil Phinney of the CUJ
Wus Gone was born with one kidney.
Now he needs a transplant so he can see his sixth-grade son, Harley, graduate from high school.
Two years ago, his poor eating habits – “whatever was greasy, sweet or salty” – caught up to him.
His kidney has virtually shut down. He sits for 12 hours a week in a chair as his blood is filtered and cleaned through a dialysis machine.
“All I ate was fast foods. I never ate vegetables. It was always burgers, Mexican and Chinese. And I didn’t have any portion control. I’d eat until I couldn’t eat anymore,” Gone said.
He was up to 285 pounds when, at the age of 36, he was diagnosed with Type 2 diabetes.
He slimmed down to 168 and celebrated with a bacon cheeseburger that triggered the return to his old unhealthy habits and, six years later, Type 1 diabetes.
At the age of 42, obese, out of breath, and nearly uncontrollably anxious, Gone was rushed to the hospital. He needed morphine to calm down.
“It felt like the bed was standing up and I was going to slide right down. They told me to relax but if I did I thought I’d slide right off the bed. My sugars had blown off the charts. They thought I was going to go into a diabetic coma,” Gone said.
He knew what that looked like. He’d seen his brother in a diabetic coma for two weeks at Oregon Health Science University. But his brother’s diabetes was controlled.
“He got two kidneys. He lucked out,” Gone said.
Gone learned he had only one kidney when he was 9 years old.
His fishing family was living on the Columbia River near Lyle, Washington.
He’s not sure how, but he developed a kidney infection that nearly killed him. His fever was so high that doctors at the hospital in White Salmon put him in a tub of ice to cool his body temperature.
The ice brought the fever down, but he still needed a procedure at a Portland hospital. He said physicians had to “burn out” the infected tissue in his kidney.
That’s when doctors told his mother he had been born with a single kidney. After the procedure even his one kidney wasn’t fully intact.
“I think I put it out of my mind and tried to live a normal life,” Gone said. “I never had a problem until this Type 1, uncontrollable diabetes.”
An enrolled member of the Confederated Tribes of the Umatilla Indian Reservation, Gone tries to live a normal life.
He is a custodian at Nixyaawii Community School (NCS). He starts work about 5 a.m. and gets off at 1:30 p.m., which frees his afternoons for dialysis.
On days when he cleans the gym floors and bleachers, he’ll put in more than 17,000 steps.
“I average at least 9,000 steps every morning. I like it and I appreciate my job,” said Gone, who has trimmed to down to 208. “It keeps me motivated; it’s exercise basically and I feel good afterward.”
But he also spends four hours, three times a week, in a chair at Davita Dialysis Center on a machine that does the work his kidney is supposed to do.
The kidney, a bean-shaped organ that lies just below your rib cage, removes waste and fluid from your body. They filter your blood, sending toxins to your bladder, which your body later eliminates during urination. The kidneys level your blood pressure and ensure that you have the right amount of minerals, like potassium and sodium (salt) in your blood. Finally, they make the hormone that causes your body to create red blood cells.
When the kidneys can’t do their job, the body becomes overloaded with toxins. This can lead to kidney failure, which can be life-threatening if left untreated.
When a person with kidney disease becomes so very severe and crosses a point where there’s not enough function to maintain the body, they need either dialysis or a transplant becomes necessary.
Doctors call it “end-stage kidney disease” when the organs are functioning below 10 percent of their normal function.
Gone’s kidney functions at 3-4 percent.
“I didn’t want to hear ‘dialysis’,” he said.
But two years ago on the Monday after the Pendleton Round-Up, at the age of 48, Gone had his first dialysis treatment at Davita.
“I thought it was the beginning of the end. But at the end of my first treatment there was a patient who was a tribal member and he said, ‘Hi Wus.’ He said he’d been on dialysis for seven years and he looked fine. I didn’t know he was a dialysis patient and I thought maybe this isn’t the end.”
Gone receives Hemodialysis, which requires a machine and a filter called a hemodialyzer. The machine works as an artificial kidney.
Hemodialysis requires a “fistula,” which is a surgically created passage between an artery and a vein. Gone’s fistula is on his left arm. It looks like two strands of bruised rope twisted together on the inside of his forearm.
Once Gone is connected to the dialysis machine the blood leaves the patient’s body via one needle, which he said was “like a finishing nail”, and enters the machine. It is then cleaned and it reenters the patient’s body via a second needle. The process lasts approximately 3-6 hours.
“You can tell if the tech knows what they’re doing,” Gone said. “If they stretch the skin and stick the needle in, it slides in and you don’t feel it. You become numb when you do it three times a week after a year and a half.”
Gone, started taking better care of himself and doctors put him on a transplant waiting list. He went to Spokane and Tri-Cities for a battery of tests.
Even though he was on dialysis, doctors were worried that he might not be able to control his diabetes after the transplant.
A couple of months into the dialysis Gone was still in rough shape. He was retaining fluid.
“My shoes were tight, my baggy clothes were tight, but after a while on dialysis I was managing my intake of food and fluids and feeling stronger.”
He dropped his hemoglobin A1C from 12 to 7.6 and is trying to drop it further to 6.5.
“And I’ve been making healthy choices food wise,” Gone said. “I don’t drink pop or coffee. Just unsweetened tea and water. Once in a while fruit juice, but a ton of water.”
His dialysis is on Monday, Wednesday and Friday. He gets to drink 32 ounces of fluid on the days in between but that’s not much, he said, when you have to count the liquid from a Popsicle or an apple.
“Dang. I could drink that in one drink. It’s really hard to not drink. You’re thirsty all the time. I thought what about sugarless hard candy and I was popping those all the time. That helped but when they say sugarless there’s still sweetener.”
Now he eats fist-sized portions of mostly fish, chicken and pork, vegetables and white rice. If he eats potatoes he boils them twice.
“No salt. Mexican and Chinese are out of the question. Fruit and vegetables are good, but minimal on fruits. For the longest time I couldn’t eat bananas because they’re high in potassium.”
On a typical day, his diet may consist of a little bowl of mush or an egg sandwich on low-carbohydrate bread from the kitchen at Nixyaawii Community School. Lunch might be a roast beef sandwich on low-carb bread. During dialysis, because the machine is cleaning his blood, he’s likely to eat a peanut butter and jelly sandwich. At home, his partner, DD, might make pork chops, vegetables and rice. He mostly drinks water.
Speaking of DD, she’s been a big help with his eating habits, Gone said.
“She’s really helped me with my nutrition. She knows what I can and what I can’t eat, what I should and what I shouldn’t eat. I come home so exhausted and she has dinner. I could lay down and close my eyes and be out for the night so I’m so glad she’s there. I’m so fortunate that she’s there.”
Gone, the father of three sons (Harley, 11, Theodore, 28, and J.D., 32) is around NCS students all day long. He’s a quiet guy who doesn’t make a lot of ruckus unless he’s singing around the big drum.
But he’s thinking more and more about ways to let young people know what they’re in for if they don’t change their poor lifestyle choices.
“I dump the garbage cans at work and see all these McDonald’s and Wendy’s and DQ cups and I look at these kids who are going to regret it when they get older,” Gone said. “I tell my boys they better start eating healthy or they’ll be sitting where I’m at.”
Gone said he’s tried to tell students what diabetes can do to their kidneys and liver but they are “oblivious.”
“I was the same way. I was active. But then I started sitting around and eating wrong and when you reach a certain age, boom it hits. It really hits you,” he said. “I try to talk to them. I wish kids would look down the road and start now rather than wait until it happens.”
Now it’s a waiting game.
“I imagine there’s a lot of people ahead of me,” Gone said. “I’ve been on the waiting list two years now. The doctor told me I could get a kidney within four years. He said this year maybe. I don’t know if he’s trying to build my hopes up. All I can do is take care of myself and be ready if they call.”
Gone said he’s heard a lot of stories about people who have received kidney transplants that are living full lives so he’s optimistic.
“It can happen and hopefully it happens for me,” he said. “I’m hoping and praying I’ll be able to run down the road. I see people running and I wish I could run, but I don’t think I could make it out of the parking lot.”
A new kidney might give him a second chance at some of the things he’s missing right now.
He wasn’t able to go to watch the Nixyaawii boys win the Old Oregon League title in Baker City in February.
“I was sitting at dialysis when Fred (Hill) called. He was gassing up at Arrowhead and said they were heading over. I told him I wouldn’t get off for another hour. He said, ‘Well, see you later.’ That sucks. I’m always at districts. I scream around for the girls and boys. I sing my butt off for them but I couldn’t make it. I missed out on that.”
Gone said he’s grateful for his employment and he’s appreciated the Tribes’ willingness to allow him to deal with his health issues.
“I’ve had to take time off for testing in Tri-Cities and Spokane and Portland when I first found out I was eligible for a transplant and the Tribe has been understanding,” he said.
He also is thankful for the people at DaVita.
“They rock. Those guys have kept me alive,” he said. “They’ve helped me make it this far. I’m so fortunate to have them right up the hill. They were going to send me to Hermiston, but they heard I was working and wanted to keep working and they found me a spot.”
Sometimes Gone has enough energy to get to town, but most of the time he’s dragging himself in the door.
Gone gets up early every morning and takes pride in a shiny gym floor at Nixyaawii. After the little kids leave their bare footprints during the day and the basketball teams leave their Nike scuff marks after school he polishes the hardwood again.
The work satisfies him.
The steps he takes each day and the diet he’s on keep him as healthy as he can be.
He’s motivated to stay strong and his inspiration is Harley.
“Days like this morning,” he said, “I’m tired and have to push myself. I need to do it for me. I’m trying to take care of myself, get stronger. I hope to watch my son graduate. I have seven more years until he graduates.
“Harley is my main motivation,” Gone said. “When I get up at 4, I’m at work at 5, work until 1:30, up there (Davita) for four hours of treatment and I’m so tired and want to go home … I walk in and see him, I see him, and it makes it all worthwhile.”