Search and rescue

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Louis Pintarelli never appreciated normalcy until it was robbed from him. Snippets from his life — hitting the books at St. Joe’s Prep, looking out for family members, occasionally tossing a football with friends — exemplify a child primed for adulthood. The 20-year-old even enrolled at Temple University in 2007 in the hopes of obtaining a family first — a bachelor’s degree in business.

Life was going according to plan — or so he thought. This year, Pintarelli realized how atypical he actually was right down to his type-O blood. More than a year after his father was diagnosed with cancer, Pintarelli fell ill.

"Last Christmas, he got sick and we thought it was just a virus," Pintarelli’s mom Beverly said. "A few weeks later, he was sick again and started vomiting. Then the third time it happened."

In February, Pintarelli was rushed to the emergency room. His blood pressure was sky high. A kidney biopsy later identified the problem: IgA nephropathy, or Berger’s disease. Beverly and her son soon became unwanted experts on the kidney illness without a cause or cure. Knowledge obtained through Internet research and doctor visits became their weapons.

"I felt like my life ended," Beverly said about hearing the diagnosis. "He’s a great kid and a great student. I felt like his world was coming undone. It seemed like his future was going in a whole different direction. Now everything is on hold and is uncertain. It breaks my heart."

Despite the pain, Beverly forged ahead. She’s taken steps to place her son on kidney donor waiting lists, all while being the sole breadwinner and caring for her husband, who is a cancer survivor.

"When I heard my son needed a kidney, I immediately stepped forward," she said. "I love him and will do anything to help him."

She’s asked almost everyone she encounters their blood type in the hopes of finding a match. (Louis can only use a kidney from a donor who is type O.) So far, no luck.

As the efforts continue, Louis still takes his diagnosis in stride.

"I’ve accepted it and am trying to deal with it," he said from inside his home on the 2700 block of South 10th Street. "I’ve been taking my treatments and hoping for a donor."

A precursor to the family’s tumultuous year reared itself last year. Beverly’s husband, Louis, developed a cancerous tumor on the floor of his mouth. Doctors removed it, performed a tracheotomy and reconstructed his jaw using bones from his leg.

"That was devastating enough," Beverly said. "This was all new territory for us."

Though Louis is cancer-free, he’s in rehabilitation. Since January ’07, he’s used a feeding tube, though the family is optimistic he’ll eat solid foods again. Doctors recently performed operations that stretched his throat and lengthened his tongue so swallowing and chewing becomes easier.

Due to Louis’ medical condition, physicians have ruled him out as a kidney donor for his son. (His blood type has never been tested, though Beverly believes it’s a match.)

Doctors can’t pinpoint what causes Berger’s disease. Blood vessels — or glomeruli — within the kidneys filter excess water and waste from the blood before it reenters the bloodstream. Due to the disease, the antibody Immunoglobulin A (IgA), which typically attacks pathogens, accumulates in the glomeruli and affects its filtration. In March, doctors told 20-year-old Louis both his kidneys were operating at 15-percent capacity. Placing him on dialysis was the next step.

In May, he underwent surgery at the University of Pennsylvania Hospital where doctors merged two veins in his left arm to prep him for the procedure’s needle insertions.

"Once you get on it, there’s no turning back," Beverly said of dialysis. "I was always hoping that the doctors would be wrong or the kidneys would start functioning. But that’s not the reality of it."

Three days a week, Louis heads downtown for his four-hour treatments.

"After one treatment, I almost fainted and passed out," he said. "I’m tired a lot more and don’t feel like moving.

"I’ll try to take a nap for a few hours."

His dietary habits also have changed. High-potassium and sodium-laden foods aren’t as prominent and he must subsist on drinking only 32 ounces a day to prevent fluid retention.

Despite bouts of fatigue, Louis remains courageous.

"I think because of his age, he has a better likelihood of tolerating dialysis for a longer period of time that would extend beyond the three- to five-year period," Beverly said. "I haven’t really thought beyond that."

Louis is on waiting lists at Thomas Jefferson University Hospital and New Jersey’s Our Lady of Lourdes Medical Center. And there’s a good possibility he’ll be added to the list at Johns Hopkins Hospital in Baltimore.

But Beverly isn’t taking any chances. Exacerbating her son’s illness is his blood type. Since O is dubbed the "universal donor," individuals with other types can receive it. However, O individuals are confined to receiving only their own blood type.

Outside of a few in-laws in Italy, Beverly has asked all family and friends to have their blood tested (Her daughter, Rachel, is not a match). Everyone has turned up no for O.

Once Louis obtains his new organ, it will co-exist with the diseased kidney, which will not be removed.

Slowly but surely, the family is seeing a silver lining. This summer, Beverly, a secretary with the Philadelphia School District, received a promotion and now works at the South Philadelphia Regional Office. Due to the onslaught of his disease earlier this year, Louis dropped most of his classes at Temple, but is enrolled in two this semester. He has no doubts he’ll graduate with a business degree.

As for his mom, life may have thrown her a curveball, but, "You go through phases of shock, depression and then you just say, ‘I have to get out there and help him get back to a normal life,’" she said. "That’s where I am right now."

To contact Beverly Pintarelli, call 215-551-9025 or e-mail bpintarelli@comast.net.