Getting a Third Chance at Life

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Getting a Third Chance at Life

By Rachel Stern
Signal Staff Writer

For most teens, their last spring semester at high school is a flurry of exciting activity - getting ready for college, wrapping up summer work or vacation plans and finding a date for the prom. But for teens with kidney disease, the activities are all too familiar - doctor's appointments, blood checks and dialysis. When Jenny Huey of Valencia was a senior in high school, she was receiving her second kidney transplant instead of attending her senior prom. That's why Huey, now 25, supports the Renal Teen Prom, which is held annually in January on the campus of Notre Dame High School in Sherman Oaks.

The prom is open to young people ranging from preteens to their mid-20s. Huey, who has attended the prom as a guest for several years, became a volunteer this year. It's wasn't her first foray into volunteering for a kidney disease organization. In fact, Huey was the poster child for the National Kidney Foundation when she was in elementary school.

"My mom and I were just talking about this the other day," Huey said. "I was their spokesperson, and the 'face of the campaign.' We got involved when someone approached us at University of California, Los Angeles where I was a patient."

Huey's battle with kidney disease has been long and convoluted.

"I first got sick when I was 2," she said. "I gained 17 pounds over one weekend."

She was having trouble breathing, and "everything was off," she said. Her parents thought she had been bitten by something.

Kidney disease like Huey's (known as idiopathic nephrotic syndrome) is not a genetic disorder - in fact the name itself means that doctors don't know why her kidneys failed.

She has already had two transplants, and is waiting for a third. Her first donor when she was 5-years-old, came from her father, Lee Huey. That kidney worked for eight years, as did her second, which came from a cadaver.

"Even when the match between the donor and the recipient is good, eventually the body rejects the (foreign) organ," Huey said.

Dialysis

Dialysis is the process whereby machines do what the kidneys would do on their own if they functioned, according to the National Library of Medicine. The machines take over from the kidneys by regulating the body's water and electrolyte balance, clearing toxins out of the blood and discarding through the urine, producing hormones and making sure the balance of water, salt and acid in the blood is stable and correct. There are two kinds of dialysis: hemodialysis, and peritoneal dialysis. Peritoneal dialysis involves doctors implanting a plastic tube that fills the patient's abdomen with water at night. The body's wastes then go into the fluid, which is removed in the morning - a process that is essentially what the kidneys would do, but less efficiently.

During hemodialysis, the patient is hooked up to a machine which takes the blood, "cleans" it in a machine and replaces in the patient. Jenny Huey undergoes home hemodialysis - a process which forces her to stay in her parent's house, because she can't hook herself up to the machine.

"I was all ready to go out on my own, and get back to school," said Jenny Huey. "Now everything's on hold."

An Emergency

In 2003, Jenny Huey had been living on her own when her second kidney failed on Dec. 19.

"I was sick, but everybody was sick (with the flu), so I figured that's what I had, too," she said.

But then on the morning of the Dec. 19, she woke up and "couldn't urinate," she said. She called her mom, saying she had to go to the hospital, and then went into pulmonary arrest.

"She was in the hospital for two and a half months at that time," said her mother, Isabel Huey. "She had bleeding in her brain due to high blood pressure."

She was treated with emergency and in-center hemodialysis three times a week at the Dialysis Center at Henry Mayo Newhall Memorial Hospital, for three hours each time. This treatment lasted for two years, but as any kidney patient knows, it is far from a perfect solution.

"It makes you feel sick and dizzy, nauseated," said Jenny Huey. "There was never a smooth session. All that stuff takes its toll."

Even worse, Jenny Huey had an allergic reaction to the chemicals that were used to clean the machine - resulting in panic attacks that "felt like you were having a heart attack," she said. Still, there was no way she could stop the treatment. Then about a year after the hemo at Henry Mayo she went back on peritoneal dialysis. In fact, Jenny Huey has a permanent catheter in her neck to facilitate the process.

"I'd die in a week without it," she said.

Another Scare

In August of 2006, the Hueys had another scare. One night when she was ready to go to sleep, Jenny Huey said she felt something was off.

"A little voice inside me told me to check my blood pressure," she said. Though her blood pressure is usually normal-to-low, that night it was high. Telling her dad "there was a problem," the two set out "at 100 miles an hour" for the hospital at UCLA, where her doctor, Larry Froch, is in residence.

"I remember I felt like I wasn't there," said Jenny Huey. "And I couldn't read the release form - everything was blurry."

It turned out Huey had had a stroke, which affected the vision center of her brain. She still has problems seeing, though her vision is improving gradually.

A Waiting Game

Huey's brother, Matt Huey, had been planning to give her his kidney, which is a perfect match. He has been undergoing tests and physicals, as has Jenny Huey herself. Paradoxically, the doctors have to make sure that her immune system is weak enough to accept a transplant.

"The higher the levels of antibodies I have," said Jenny Huey, "the more likely it is that I'll reject the kidney."

The family had been hoping for an operation in April or May, after which Huey would have to go for checkups every day for one year at UCLA.

Unfortunately, the wait at UCLA is between five and seven years due to Huey's O-positive blood-type.

"We actually are looking to go to the Mayo Clinic in Phoenix," she said. "Because we don't know if Matt is going to be able to do it."

At the Mayo in Phoenix the average wait for a kidney is three months. The Hueys will fly out there next month to get an update.

Giving Back

Since her 2003 transplant failure, Huey's doctors have not allowed her to work, though they do allow her to volunteer for the Renal Support Network, the organization that sponsors the Renal Prom. Lori Hartwell, head of the Network (who suffered kidney failure at the age of 2 due to an E. coli infection), assigns Huey to speaking events - for instance the organization's PEPP program: Patients Educating Patients and Physicians.

"It allows patients to talk about transplants and give their experiences," Huey said.

"Jenny spoke to about 400 kids this year," Isabel Huey said. "I'm really proud of her."

As for the rest of Jenny Huey's time, she's "working on" a social life, and realizing that despite all her hardships, things do get better. Even though it might seem she has no more to learn about kidney disease, her experience continues to change and challenge this optimistic and brave young woman. For instance, she recently changed her major at College of the Canyons from pre-law to pre-medicine. Meanwhile, she's doing what she can to ensure that other youngsters with kidney disease have the same chance at a life that may not be "normal," but is nonetheless worth every second.

Original source: http://www.the-signal.com/?module=displaystory&story_id=47463&format=html