Tuesday, April 24, 2007

John Lee finds strength to move on after illness takes his arms and legs

FLINT -- John Lee looks down at his prosthetic legs and gathers strength.
The time has come to take the first step back to independence. To reclaim his legs, his future, his life.
He leans forward in his wheelchair and pushes up with all his might -- brow sweating and muscles trembling -- to stand on his own for the first time in five months.
It's a task most take for granted. But standing -- if only for four minutes -- is a monumental accomplishment for John, 47, who fell victim to a fast-moving, vicious septic infection in October that claimed all four of his limbs and left him near death.
John eases back into his wheelchair with the help of his physical therapist, hangs his head and chokes up.
The fact that John is not only alive, but full of determination, is a testament to his extraordinary courage in the face of an illness that doctors say could have -- should have, by most accounts -- killed him.
"I almost lost my life," said John, of Imlay City, about 40 miles west of Port Huron. "I want my life back. I'm giving 110 percent. I'm going to do this. All I can do is thank God that I'm alive today."
The road hasn't been easy.
John -- who was laid off from his truck driving job before illness struck -- is likely facing bankruptcy and foreclosure on his home as he and his wife, Sherry, struggle with medical and related costs not covered by Medicaid.
And the physical journey is far from over. In fact, it's just beginning as John faces the unimaginable challenge of relearning life's simplest activities -- such as eating, walking and bathing -- with four prosthetic devices.
The man before the illness
John is strong, independent and, some would say, a little rough around the edges.
He's a man's man who loves cracking dirty jokes, cruising the back roads near Fostoria on his beloved 1993 Harley-Davidson Heritage Softtail and drinking Jack Daniels and Coke with his buddies.
A U.S. Army veteran who never finished high school, he enjoys the outdoors, hunting for deer in the Thumb and riding along the Port Huron shoreline on his Harley, stopping at A&W for chili dogs and root beer floats with Sherry. He rarely misses a motorcycle swap meet or the Renaissance Festival in Holly every year.
But he's also a proud family man who likes to grill steak and watch movies like the Wayans brothers' comedy "White Chicks" at home with Sherry, 36, his wife of nearly three years, and three stepdaughters, Amanda Earl, 18, Kaley Earl, 16, and Jamie Earl, 12.
Remembering those times has helped John endure the nearly six months he's been lying in a hospital bed at Hurley Medical Center in Flint. They have helped him brave his new life as a quadruple amputee.
"I've done a lot of thinking," John said. "I've got a good life. And I've got a good wife, and I've got good family and friends. That's what kept me going.
"I had so much to fight for."
But as much as John pushes himself to return to normalcy, he knows life won't be the same.
He's accepted the harsh reality that after 25 years, he'll never sit behind the steering wheel of an 18-wheel big rig to support his family.He's also realized he'll never again ride a two-wheel motorcycle with the Tribesmen, a close-knit motorcycle club from Fostoria that he joined a decade ago.
That chapter of his life, however, isn't completely closed.John said his goal is to ride again -- by next year -- on a three-wheel motorbike or one with a sidecar built by his club brothers."I've learned you live your life to the fullest," John said. "Today, you could click your fingers and it could change tomorrow, you're laying in a bed like this. You've just got to be strong."
The life John knew changed instantly
In the time it took Sherry to dash downstairs for a load of laundry on Oct. 15, John's life changed.
Arms loaded with clothes to fold, she walked by John resting on the couch and couldn't believe what she saw -- his nose and ears were nearly black.
"I knew that something was wrong. I didn't want to scare him, either," said Sherry, a nursing student at Mott Community College in Flint. "I said to John, 'To be honest, not to scare you, I've only seen this with dead patients. I need to get you to the hospital.' "
John had been feeling ill the night before, and by the next morning his symptoms had worsened.
What they didn't know was that toxins from a common urinary tract infection -- complicated by a kidney stone -- had begun circulating through his body, crippling multiple organ systems, said Dr. Bernard Danan, a trauma and critical care surgeon at Hurley.
The last thing John remembers after Sherry loaded him into their run-down 1997 Chevrolet work van was worrying about the long emergency room wait at Lapeer Regional Hospital. That wasn't an issue.
By the time doctors removed his clothes a few minutes later, the blackish color on his nose and ears had spread down his body. Sherry said she never expected him to make it out of the emergency room alive, let alone survive the ambulance transfer to McClaren Regional Medical Center.
There, doctors diagnosed John with severe sepsis -- a bacterial infection in the bloodstream -- and gave him a 1 percent chance to live. He was immediately put on dialysis and, for more than two weeks, stayed in intensive care while in a coma.
Essentially, the kidney stone backed up the infected urine, which seeped into his bloodstream and quickly spread the bacteria through his body, Danan said. As a result, John went into septic shock.
His kidneys shut down, his blood pressure dropped, and he was placed on a ventilator. The infection also spread to a valve in his heart, Danan said.
His body went into survival mode -- it clamped down on the vessels that deliver blood to his arms and legs and redirected it back to his heart to keep him alive. Within a few weeks, his limbs had evidence of gangrene -- and literally died -- from lack of blood.
Danan said such extreme cases of sepsis are rare.
More than 750,000 cases of severe sepsis occur annually nationwide, according to the Des Plaines, Ill.-based Society of Critical Care Medicine. It kills about 215,000 people a year, according to Eli Lilly & Co.'s sepsis.com, a reference provided by the National Center for Infectious Disease.
"From the beginning, with all the complications, I didn't think he was going to survive," Danan said. "He's a fighter."
"Who the heck is this guy?"
When John awoke from his coma more than two weeks later, he didn't recognize the man staring back at him.
His face was swollen, and his hands and legs looked like they were badly burned.
After a few moments, John realized the man wasn't a stranger. He was looking at his reflection in the window on the hospital room door.
"I was somebody I didn't even know," he said. "I looked down at my hands and everything and saw what had happened. I knew I was going to lose my legs and my hands.
"That's when I knew the only way I'm going to get out of this is to get off my ass and do what I've got to do and be strong."
It wasn't easy. John had multiple setbacks -- wounds on his back and buttocks, a heart attack, pneumonia and poor blood flow to bones in his shoulder -- that threatened his recovery and positive attitude.
He was transferred to Hurley's burn unit on Oct. 27 because the facility was better equipped to handle his blackened limbs. There, doctors broke the news about amputation.
John's legs were amputated at the calf on Nov. 14. Doctors amputated above the knees and below the elbows on Nov. 27.
Shortly after his surgeries, John became agitated when some staff members pushed him to begin working out his muscles in his hospital bed.
"I said 'Give me some time,' " John said. "You go through a lot of pain and agony. It was rough for me for a couple of days. At a little point there, you just felt like you didn't give a s--- no more."
Hurley had him talk to a clinical psychologist, whom he met with regularly to discuss his emotional issues: fear of the future, finances, regaining his independence.
Those are common fears, said Kirk Stucky, the psychologist who worked with John.
"A lot of folks get so overwhelmed about what the future holds that they don't do their rehab. (John) remains a pretty motivated guy," he said. "The goal is to try to help the person focus on what they can control and stay as much on the present as possible."
It's unclear how many quadruple amputees there are nationwide, but John's prosthetic specialist Bob Maniere believes the number probably doesn't exceed 200, because most don't survive such trauma.
Through it all, Danan said he's never had a patient who dealt with the loss better than John.
"There were bad days that he was pretty angry and justifiably so. After that initial anger and disappointment, he'd bounce right back."
A journey marked with hurdles
Despite the mood swings that marked those early weeks at Hurley, John understood the key to recovery was getting physically and emotionally ready to be fitted with prosthetic arms and legs.
He began that lengthy process about a month after his amputations, with Maniere, president of the Clinton Township-based Comfort Prosthetics & Orthotics.
At that time, John started wearing shrinkers, or fabric compression bandages, over his residual limbs -- stumps -- to reduce the swelling. Once the swelling subsided, Maniere took measurements and impressions of his limbs with a fast-drying plaster wrap.
In the meantime, the frustration was overwhelming. John had to set aside his pride and rely on others to help him with even the simplest tasks -- from scratching an itch to brushing his teeth.
Eventually, however, there were milestones.
On Feb. 20, John fed himself for the first time. A fork was attached to the ends of his "check sockets," clear plastic sockets used to evaluate fit before the prosthetic limbs are made.
John had to rest between bites of a pre-cut peanut butter and jelly sandwich because his arm was tired. A few pieces fell off his unsteady fork. Eventually, he finished his sandwich.
"I'm like an 80-year-old guy almost. I do this, and I need to stop (and rest)," John said. "I'm moving along and that makes me happy."
John's arm coordination and strength improved the more he wore his check sockets. And by April 3, he used his new arms and legs together for the first time. Maniere said it will take time and patience before John is comfortable with the prosthetics.
"Skill matters," he said. "It's going to be a long process. It takes a baby nine months to learn to walk. John is in the same shoes."
John will eventually be able to walk short distances -- from the car to the doctor's office -- on his own. For longer distances, he'll always rely on an electronic cart or wheelchair because he'll wear out quickly.
His prosthetic arms will allow him to do simple activities, like eat, open doors and brush his teeth. He won't be able to tie his shoes, and it will be a challenge to use the bathroom by himself.
The burdens are heavy
When John lost his independence, the weight of responsibility landed on Sherry's shoulders.
She sat beside him nearly every day, writing thank-you notes to those who donated to his rehab fund.
She began preparations to put their home up for sale, since they can't afford the $1,400 monthly house payment, and found a wheelchair-accessible apartment in Lapeer.
And she's tackled the daunting task of filling out paperwork so he could get Medicaid to help offset medical bills nearing $1 million. John didn't have health insurance before his illness because it was too expensive to pay out of pocket once he was laid off.
Her work hasn't come without a price.
"I'm tired," said Sherry, who was recently diagnosed with thyroid problems.And, "coming home by myself is very lonely. The times that I break are usually when I'm by myself. I do that often, like when I'm bagging the garbage.
"It reminds me that John used to do that."
With John unable to work and Sherry juggling school and caregiving duties, the couple faces foreclosure on their Imlay City home. The bank has afforded them a year to sell, but Sherry is skeptical because the market is unstable.
And bills continue to climb. Sherry begins each day with a cup of coffee as she looks over the utility shut-off notices and tries to pay the bare minimum from their dwindling savings account.
John's disability qualified him for Supplemental Security Income, which will pay him $671 a month. It's just enough to cover their $590 a month rent at the new apartment, she said.
"It's stressful, but I can't sit there and dwell on it," Sherry said. "I've got so many things to concentrate on."
John remains focused on his long-term goal: riding again.
"It's very important for me. I love bikes. We've got a long road," he said. But, "it is possible."
You can reach Christina Stolarz at (586) 468-0343 or cstolarz@detnews.com.

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