THURSDAY, APRIL 28, 2005
ANDY MARSO
THE UNIVERSITY DAILY KANSAN
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Dan Marso hasn't changed his clothes in days. He's wearing the same T-shirt, the same jeans he had on when he arrived, and he's beginning to stink. His parents and even the nurses make comments, so he asks Andy's friend Clay Britton if he'll go to Wal-Mart to buy him some clothes. Dan feels like he's on some kind of drug — he doesn't need sleep, food, a change of clothes, a shower. The nurses tell him to leave, go to the Friendship House nearby, where the family sleeps in shifts, but Dan responds that there no reason to leave and a damn good reason to stay.
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Andy made it through the night, but his organs did start to fail. His fingers, toes, even his nose, turned black. Dan stares at Andy's hands, sees the prune-like fingers that look like they're shriveled talons, skin charred black like it's been held under a fire. Although his brother is still breathing, Dan knows he has to stay.
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Ginny Marso, Andy's mother, shares in a moment of downtime with Harry Marso, Andy's father, while Andy practices with his new prosthetic hand. Harry had just come back with a cup of Starbucks coffee, which the barista gave him for free because the coffee shop was closing down for the day.
The nurses tell him to leave, go to the Friendship House nearby, where the family sleeps in shifts, but Dan responds that there's no reason to leave and a damn good reason to stay.
During the first days in the ICU and after, when Andy's moved to the 5th floor Burn Unit, Ginny decides the family should take shifts — never leave Andy alone, always have a family member by his side. She can't control the fingers and toes shriveling, the flesh dying, but Ginny can provide Andy a warm, familiar hand next to his at all times.
"So, what's the plan?"
Ginny is on shift when Andy first comes off the ventilator. She sees her son's constant, positive attitude in the first words he whispers:
Dan takes the night shift, 2 to 8 a.m. He can't sleep anyway, and it's at these times Andy is the most alert. The drugs have worn off, there's less commotion, and more time to talk.
During his shift, Harry stares intently at the medical monitors. He panics when Andy's respiration rate jumps or his oxygen level falls. He wonders how anyone can survive with a heart beating that fast. Sometimes, while Andy sleeps, Harry touches the few pink patches on Andy's blackened hands
It's hard to act normal when Andy's fever spikes nightly at 104 degrees, his breathing accelerates to 40 breaths a minute, his heart races at 145 beats a minute, and he contracts pneumonia in his left lung.
him the paper; Josh, Andy's elder brother, challenges him to try things on his own, even if it's just ordering off a take-out menu. Ginny feeds him the needed 2,900 calories a day through protein-filled shakes and meals to help him gain his strength back. Dan's job is to keep his spirits up. He jokes, talks Minnesota Twins baseball and tries to bring a sense of normalcy to Andy's Burn Unit room.
Often, it's just a request.
"I need a glass of water."
"Dan, I need you to scratch this itch on my nose."
"Can you raise my feet up and help turn me over?"
It's humiliating for Andy, and Dan knows it. Andy has always been the watchful, protective big brother; the rational voice, his adviser, his best friend. Andy never asked for anything, and now he has to ask for everything. Dan tells him to just ask
— forget embarrassment, because it's not about dignity. He says Andy would do the same for him.
Each family member plays a role — Grandma fluffs Andy's pillow, rubs his sore shoulders and back; Harry reads
Two weeks into this hospital stay, Andy, Harry and the whole Marso family wonder what will
and thinks about the reperfusion he's read about, when blood flows back into blood vessels.
"A prosthesis is basically a tool," Matthew Luetke, Andy's prosthetist, said. Andy's prosthetic hand will allow him to complete everyday functions like brushing his teeth, grabbing a doorknob and picking up a glass of water. Because Andy's prosthetic only opens and closes, fine motor skills such as tying his shoes or picking up a penny are harder to do. Andy will undergo six weeks of training to use the hand.
happen if the blood doesn't flow back, what will distinguish the dead tissue from the living.
To physicians, it is the "the line of demarcation." To Andy, it is the line between the parts of his body he must lose and the parts he can keep.
Where to draw the line
Thomas Lawrence, section chief of plastic surgery at the Med Center, explains that the line of demarcation is the separation between the sensate tissue and the necrotic tissue—the line between what's alive and what's dead. Once that line is clear, Lawrence will know what he needs to amputate.
When Andy was first admitted Steven Simpson, his emergency care doctor, was optimistic. He thought Andy would lose a few fingertips, maybe one or two toes. Now, Lawrence thinks it could be whole fingers, maybe all of the fingers on his left hand, all of the toes, maybe the feet.
To prepare for amputations, the nurses, burn technicians and Lawrence remove Andy's dead skin through a process called "debridement" in a place called "the tank."
Debridlement requires cutting away the loose, black skin and tissue until Andy's hands and feet bleed, meaning there's still living tissue underneath. Because Andy's hands and feet are so shriveled, the tendons and nerves twisted together, it's hard to tell blackened skin from muscle or bone. The technicians spray water on his wounds while the doctor navigates Andy's skin, cutting it inside the tank — a six-foot long, seven-inch deep steel tub. The tank's only padding is a thin blue piece of foam covered with plastic wrap. The tub tilts down, and when Andy lies inside, naked except for a strategically placed washcloth that he says is hardly worth the effort, the bloody water washes down to a drain by his feet. The tub's tilt causes him to slide, and his feet hit the bottom of the tank. He cries out in pain and the nurses must pull him back to the top. He begs them to lay washclothes over his hands, because he can't bear to look at what's left, and he keeps his eyes straight up, away from his feet and arms.
The tank sessions last from one to two and a half hours, and Andy requires at least two doses of Fentanyl, a juiced-up brand of morphine, administered every hour, to make it through the pain. At first, nurses put a needle straight into the central venous line in his neck. In seconds the pain eases. But soon, Andy asks for more and more doses.
Andy pleads with nurses to "snow him," put him back into a coma so he can't feel anything. Instead the staff must wean him off the drug, first switching him to Fentanyl lozenges, then a Fentanyl lollipop. Andy calls it "morphine on a stick."
When Andy gets back from the tank, the burn techs re-bandage his hands. Early on, after a particularly grueling session, and before the tech can cover his hands, Andy stares at his claw-like fingers. They look like he's spent the last three weeks in a bath tub with black dye.
Staring at his hands, Andy bargains with God.
Staring at his hands, Andy bargains with God.
"OK, I'll make you a deal. Give me my hands back, and I'll devote the rest of my life to feeding poor kids."
A burn unit technician watching Andy staring so intently interrupts this silent plea.
"OK, I'll make you a deal. Give me my hands back, and I'll devote the rest of my life to feeding poor kids."
"Andy, you've gotta let them operate — see that right there? That's your tendon."
He points to the exposed ligament. Andy realizes it isn't going to get better. The blood won't flow back to his fingers; the black isn't turning pink.
He changes his prayer and asks God for strength instead.
Andy's family,schol hall friends,a crowd of reporters and cameramen and Chancellor Robert Hemenway all crowd into the Burn Unit waiting room so Hemenway can present Andy his college diploma.
Physically, Andy doesn't have the strength to attend his KU graduation, three and a half weeks after he fell ill. He was to carry the journalism flag, the honor for finishing first in his class, down the Campanile hill into Memorial Stadium. But after the pneumonia, the move back to the ventilator and the punishing tank sessions, it's clear walking the Hill won't happen.
Bittersweet graduation
In Andy, Ellis sees someone like her, young, just starting out, and she wonders how Andy — always her "Andy-man" — can stay so positive, how he faces the pain.
Dan stands in for his brother, carrying the flag, while Ginny and Harry plan a hospital commencement party.
Before the ceremony, Jeny Ellis, a 24-year-old burn unit technician, reassures Andy she'll rescue him if the attention gets too intense.
"Andy-man, if you start getting tired or upset, just tell us and we'll get you outta there."
Hemenway hands Andy his diploma and WHAM, 10 reporters compete to ask him questions. Andy panics, starts to read his short statement
but starts to break down. It's too much at once, too many people in too small a space. His tears stream and the cameras roll. Dan and Jeny wheel! Andy back to his room where he, Dan, Jeny and three other nurses cry together, away from the crowd. Jeny kneels down beside Andy's wheelchair.
"but this is the first time you've had four girls cry with you, Andy-man."
141 days of endless summer
Andy spends May through the second week of September, 141 days, in a hospital bed, waiting between surgeries, physical training, psychologists' visits and the highlight moments — visitors. Family, friends and folks who see Andy's face on T.V., or read his story in the paper, send cards, flowers, donations and moral support. Each day
dozens of people post encouraging words on the Web site Ginny arranged for Andy, www.caring-bridge.com/mn/marso. The site is a means of release for her, and also a convenient way to post medical updates immediately.
Andy's first amputation is June 7—the toes and balls of his feet. The days before surgery he'll still spiking fevers, sweat soaking his sheets and hospital gown. At night he has nightmares the surgeons will cut too much.
Dr. Lawrence lays out the plan. After the amputations on his fingers, Lawrence needs to graft skin from Andy's thigh to the tops of his hands. To do that, Andy needs at least a thin base layer of skin where he has only mangled tendons, muscle and bone. To grow that skin, Lawrence sews each of Andy's hands — one at a time, for three to four weeks — into the wall of Andy's abdomen, where his body can generate enough new flesh for the thigh skin grafts to adhere.
After the procedure, and again in the tank, Andy looks down to his stomach. His hand is "pouched" and Andy struggles to describe the warm, moist feel of his hand sewn inside his body. He can see where his wrist connects to the fist-sized bulge of his right hand just below the surface of his abdominal skin. A pinkish-shaded goo leaks out of the incision.
Andy must lie still in bed while his hands heal in the pouch, and he passes the hours watching "The Price is Right" with Grandma, Minnesota Timberwolves games with Harry, Josh, and Dan, and "Jeopardy!" with Ginny. They wonder when Ken Jennings's "Jeopardy!" winning streak will end.
Andy wonders when the surgeries will end, when he'll finally be able to go outside and feel fresh air on his skin.
Until that day comes, the burn unit staff embraces the Marsos. Bob Hafner, a burn unit nurse, greets Andy each morning with a joke, saving the dirty ones for when Ginny and Harry aren't around. He bakes Andy protein-rich pans of tiramisu and swaps recipes with Ginny, who's looking for any kind of edible remedy to bring Andy's high fevers down, and restore the 25 pounds he's lost since April.
Andy Marso was able to do what several hundred other people did on Tuesday at the Robert J. Dole Institute of Politics. He waited in line for Bob Dole's signature on his copy of "One Soldier's Story" after listening to Dole's speech.
During his daily bandage changes, Jeny puts in an Oldies CD, and in minutes they're singing the words and Jeny's dancing to the music, looking like a grooving smurf in her blue hospital gown and hat and orange mask. Andy can't help but laugh and smile, even though today is a tank day.
Others give him hope for the future. Bonnie Henrickson, Kansas women's basketball coach, stops by to tell him about a former player who had bacterial meningitis, lost both arms and legs, yet leads a full life, finishing college and assistant coaching. Keith Langford, men's basketball player, visits Andy and tells him, "I'm a fan of yours." Matt Bellomo, a CPA in Kansas City, reads Andy's story in The Kansas City Star, and shares his story
SEE MARSO ON PAGE 8A
MARISSA STEPHENSON mstephenson@kansan.com
Andy's story worth knowing
Andy Marso was my first friend at the Kansan. As a reporter who knew his way around, he'd flash me a smile when I awkwardly walked into the newsroom. He'd wave "hi" on campus, tell jokes at the gym, and though I didn't know anyone, he persuaded me to go to my first Kansan party, and met me a few blocks away, so I wouldn't walk in alone.
Like a lot of our staff, I was working in the newsroom the Wednesday I heard Andy had bacterial meningitis, and it took seconds before I pulled up a Google search on the disease. I remembered hearing about meningitis at New Student Orientation, but I didn't know how the illness was spread or whether it was serious. I did remember sharing drinks at a Jayplay Live concert during the weekend, and that Andy was there, but I couldn't remember if I'd tried his beer that he'd told me tasted great.
The next morning I went to Watkins to receive the meningitis vaccine. I was one of 71 people who were vaccinated at the health center from April 28 to May 31, 2004. Three people were vaccinated during the same time period the previous year.
same time period. The World Health Organization reports that between 10 to 25 percent of the population carry meningitis bacteria safety in their mouth and throat. For whatever reason, these people are immune to the disease. But, the carriers can pass the bacteria to other people by close contact — sharing eating utensils, drinks, a toothbrush or a cigarette. Since Andy fell ill, I've stopped myself from sipping a friend's beer or drinking without a straw at a restaurant.
Andy said he was not aware that college students living in shared housing were six times more likely to contract meningitis. Starting Aug. 1, the University will require that all students in residence halls, scholarship halls and jayhawker Towers receive the meningitis vaccine, or sign a waiver saying they've been informed about the disease and have chosen not to be immunized.
I think every student should know about Andy's experience with meningitis, but hearing and writing the details of the past year was harder than I could ever have imagined. Some moments, I had to stop writing, drop the notebook and listen as a friend and not a journalist. I did worry our friendship would conflict with my role as a reporter, but someone had to write this important story about a meningitis victim who just happened to be a Kansan journalist. I came to realize that knowing Andy was an asset, not a liability, and that this experience was best shared with a friend. I hope through reading his account we all realize we're participating in the same reverse lottery Andy lost, and that any of us could have been him.
During the summer, I visited Andy in the hospital and he greeted me with the same smile, even while facing hand and feet amputations, needles, pills, fevers and aches and the inevitable question: "Why me?" Leaving the visits, I asked it, too. Why Andy? Why not me, any of us? Andy told me later that he'd started to ask a different question. "Why not me?" He asks it, not just because he has a relentless optimistic outlook, but also because he wants to turn his nightmare into an opportunity to educate others about the vaccine, and possibly save lives.
Much has happened and much has changed for Andy in the year since his illness. But what I learned in listening and writing his story is this: He is the same Andy who walked me to the Kansan party.
About meningitis bacteria and vaccination
What is meningitis?
There are two types of meningitis, viral and bacterial. Viral meningitis is a common but rarely serious infection of the fluids in the brain and spinal cord. The illness is mild and usually clears up within a week. Bacterial meningitis, and a strand within it, meningococcal meningitis, is a potentially fatal infection of the fluids in the brain and spinal cord, and can result in permanent brain damage, hearing loss, learning disability, limb amputation, kidney failure or death.
How is it spread?
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Meningococcal meningitis is transmitted through direct contact with an infected person sharing cigarettes or drinking glasses or through intimate contact such as kissing.
How many people die?
Meningococcal meningitis infects about 3,000 Americans each year and is responsible for about 300 deaths annually. It is estimated that 100 to 125 cases of meningococcal disease occur annually on college campuses and five to 15 students die as a result.
Source: American College Health Association
The Watkins vaccine
The current vaccine costs $73 and lasts three to four years. A new vaccine will be available Aug. 1, will cost $33 and lasts eight years.
For more information about Westkins' policy and the meningitis vaccine, go to www.kwu.edu/~athr/