You wouldn’t know it by looking at him, but 18-year-old Hunter Phifer doesn’t feel well.
“I really don’t know what it feels like to be any different,” Phifer said. “Right now I feel normal, for me. I get more tired than I used to. And I can’t really do what I want, but that’s pretty normal.”
The dimpled, charismatic high school senior looks a tad pale, and maybe sleepy, but there is nothing that indicates the peritoneal dialysis port now inserted in his abdomen, or the scars from heart surgery, or the fact he can’t eat his favorite foods. Nothing indicates that his life is slowly slipping away.
Phifer is in renal failure. His kidneys are no longer filtering his blood. At 18, he faces of the rest of his life on dialysis, a medical procedure through which blood is removed from his body and cleaned with a solution and replaced. He’ll start next month.
“There will be a tube that will go from the port in his stomach, out the door of his bedroom, into the bathroom,” his mother, Amber Atwood, said. “The solution drains into the tub every night. His blood will go through basically a washing machine cycle and in the morning, he’ll get up and unplug his tube and sterilize it, wrap it and pin it back to his belly and go on.”
But this is just a stop-gap measure.
“As he gets older and is on dialysis longer and longer, he will need more and more solution, and will be on a machine 24 hours a day,” she said. “Eventually the solution won’t work anymore. His body will start to adapt to it.”
Although his parents have know Phifer had kidney disease since birth, it was not life-threatening until recently. This past November, he took a turn for the worst. “He went into full failure,” said Atwood. “He had a big spike in his numbers two years ago, but they went down with better diet control. But now he’s plummeted. He has to have a new kidney.”
But Phifer faces significant hurdles in that quest.
At the age of 15 and already experiencing serious kidney disease, he began to pass out. “I can feel when it is about to happen,” he said.
“Everything just goes black, and I fall over, but I can still hear everything going on around me.But then I will just kind of stand back up.”
“He did it at church,” said Atwood. “He stood up to pray and out he went. And luckily we sat with our family doctor, and I just grabbed him and he said to get him in the next morning.” Phifer was diagnosed with Wolfe Parkinson White Syndrome, a disorder of the conductive system of the heart causing abnormal heart rates and palpitations. “They did a small surgery on him where they sped up his heart, and apparently when his beats every so many beats it would beat the wrong way which causes him to black out,” she continued.
Although the minor heart condition is not life threatening, it has put his hopes of a new kidney on hold. “He can’t be put on the donor list just yet,” said Atwood. “UAMS and Hunter’s transplant surgeon feel that Hunter does need to be seen in Little Rock by a cardiologist. It’s really the only hiccup holding us back.”
Even with the medical hurdles and extensive surgery, getting the new kidney may be the easy part for Phifer and his family.
“We have insurance, but it doesn’t really cover enough,” Atwood said. “We had TEFRA (medical assistance for children with disabilities), but that’s going away, so we won’t have that help anymore. Since all this started getting worse with Hunter, I am missing more work. We are really hurting financially. The surgery alone will cost us $10,000 after our deductible is met, and we have to pay 25 percent of his medications after the transplant.”
After organ transplants, patients are required to take anti-rejection medications called immunosuppressive drugs. These medications, according to National Kidney Foundation, ensure the body does not attack the new kidney, causing rejection and eventual removal of the organ.
“The anti-rejection medications that he will have to take for the rest of his life, twice a day, will be $3,500 for 30 pills,” said Atwood.
“Plus five other medications. It’s going to add up really quickly. Right now, before surgery, his prescriptions are $220, not including doctor payments. With traveling, since we go to Little Rock once a month, maybe another $500 for a hotel and food and gas.
“After surgery, it’ll be about $2,000 a month with insurance just for his medications. And that will be for the rest of his life. I worry that he’ll never be able to get out from under this financially.”
But the transplant is necessary. Until he receives the life-saving kidney, Phifer’s life is on hold.
“His body is really trying to keep up, most likely because of the stress of school, and moving around so much, he’s carrying a backpack and was working in the evenings,” said Atwood. “He’s had to quit doing that.”
“I get too tired too easily to run a mile,” said Phifer.
“School can be kind of hard. It’s high school, so you have to walk around a lot.
Getting from class to class every day can be kind of straining. It’s just progressively gotten worse. That’s just cause I’ve started deteriorating. I’m just so tired.”
Although he is exhausted and in desperate need of a life-saving kidney, Phifer remains a happy and fun loving kid.
“He is trying really hard to be a normal kid,” said Terry Elam, Phifer’s English teacher. “He is always in pain and always so tired, but you wouldn’t know it by looking at him, and he never misses school unless he absolutely has to. He is genuinely just a good kid and an outstanding young man.
He just wants to be healthy.
Everyone is just hoping for the best for him.”
“I’m just really ready to get the kidney and have this over with and hope everything goes all right,” Phifer said. “Mostly for my mom, cause she’ll be the one freaking out. I’m not really nervous. I’ve been around all the medical stuff my whole life, so I kind of just got used to it.”
“We still make him do chores,” said Atwood with a laugh. “He still has to mow and rake. But we try to not put any more on him than he needs because that is kind of keeping him going right now.”
“I’m just looking forward to running around again and doing things and going back to work and going to college,” said Phifer. “I’m ready to start climbing and free-running and not feel slowed down and heavy.
“And I’m really looking forward to eating peanut butter.”
Every 30 minutes, your kidneys filter all the blood in your body, removing waste and excess fluid.
Once the kidneys fail, dialysis or a kidney transplant is required.
Annual medical payments for a patient with kidney disease increase from $15,000 in Stage 3 to $28,000 in Stage 4 to more than $70,000 in Stage 5.
Of 118,000 Americans currently on the waiting list for a lifesaving organ transplant, more than 96,000 need a kidney. Fewer than 17,000 people receive one each year.
Kidney disease kills more than 90,000 Americans every year – more than breast and prostate cancer combined.
Every day, 13 people die waiting for a kidney
SOURCE: NATIONAL KIDNEY FOUNDATION
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