Kansas Reporter Loses Fingers and Toes to Deadly Meningitis

Andy Marso believes that pain made his life better.

ByABC News
February 14, 2014, 1:38 PM

Feb. 14, 2014— -- One evening in his University of Kansas dorm room, Andy Marso was experiencing flu-like symptoms and hundreds of purple blotches on his arms and legs. A day later, he was unable to walk, slipping into a unconsciousness and being helicoptered to a hospital intensive care unit.

It was April of 2004 and Marso had bacterial meningitis, the fiercest form of the disease, which ravaged his body with sepsis and eventually led to the amputation of most of his fingers and the front half of both his feet.

He spent three weeks in a drug-induced coma, four months in the hospital, nine months in rehab and a year in a wheelchair, enduring painful burn treatments to try to save his limbs and skin grafts.

But today, at 32, he is a State House reporter with the Topeka Capital Journal, able to type 40 to 50 words a minute with his one remaining thumb and a nub on his other hand, and is meeting all the challenges that life has thrown at him.

"I can do 99 percent of what I used to do -- but it's completely different now," he told ABCNews.com. "I use two hands to grip bigger things, and I usually make it work. I don't remember what it is like to have 10 fingers, but it doesn't bother me. This is my new normal."

Marso writes about his battle with the disease, in his new book, "Worth the Pain, How Meningitis Nearly Killed Me -- Then Changed My Life for the Better."

The book, he said, had been "a dream my whole life and another reward this whole experience gave me."

Marso also wants to create awareness about available childhood vaccines that can prevent the disease in the first place.

Meningitis is an inflammatory condition of the meninges or membranes surrounding the brain and spinal cord. It can come on abruptly with headache, fever, a stiff neck and nausea, among other symptoms, and lead to death if treatment does not begin within 24 to 72 hours.

The Centers for Disease Control and Prevention report about 4,100 cases of bacterial meningitis annually, causing about 500 deaths.

Although most people with meningitis recover, it can cause serious complications, such as brain damage, hearing loss or learning disabilities.

Infants are at the higher risk for the disease than other age groups, according to the CDC, but college students living in dormitories and those who live in close quarters in the military are particularly vulnerable.

"There is a really high mortality rate," said Dr. Pritish K. Tosh, an infectious disease specialist at the Mayo Clinic. "Before the antibiotic era, in the 1900s, it was basically universally fatal."

Today, a series of vaccines are effective in preventing the disease among children and protecting adults from exposure.

"The hallmark of the infection is it moves very fast and aggressively," said Tosh, who did not treat Marso. "People feel fairly well, and then in a matter of a few hours, they could be starting to show signs of devastating illness."

Marso developed disseminated intravascular coagulation or DIC, the response to an "overwhelming" infection, according to Tosh. "The body shuts down its organs in response overwhelming infection."

Marso grew up in St. Cloud. Minn., and always wanted to be a journalist. At 18 he went off to college and worked on the newspaper but, he said, "I never really challenged myself."

"My life before was pretty average and very comfortable," he said. "I grew up in suburbia with two parents who were supportive and successful and went to Catholic school. I was fairly sheltered."

"I didn't have a lot of challenges in my life until this happened," said Marso. "Then, suddenly, I had to really face that fact that nothing would be as easy as it used to be."

The symptoms of meningitis developed "quite literally overnight," he said. "I had seen the information signs about meningitis on the dorm bulletin board, but I had never read a word. I had no concept of what it was."

In Marso's case, the bacteria got into his blood stream and the toxins released "essentially burned tiny holes in the blood vessels." In a cascade of events caused by DIC, the body tried to close off the holes, and as a result, entire blood vessels were shut down.

The rash was a result of "blood pooling out of the tissues," he said. His limbs were suffering and he had trouble breathing because of lack of blood flow.

By the time he reached the hospital, his parents were told his kidneys would fail and he might be on dialysis the rest of his life.

"It was a minor miracle that didn't happen," said Marso. "At this point I was unconscious, but my family went through a roller coaster wondering if I would survive."

It was touch and go for three weeks. When they tried taking him off the ventilator he developed pneumonia and was put back on for 10 days. "I had the vaguest memories of sedation," he said. "Being awake long enough to gasp for breath."

Marso's limbs became gangrenous because of the loss of blood flow. He endured "weeks and weeks" of painful burn treatment, slicing off dead tissue until it bled to try to save the limbs. Pain medications only had a limited effect.

"Those sessions in the tank room were really traumatic," he said. "I had nightmares for months."

Doctors were unable to save his rotting fingers and toes and they were ultimately amputated.

Marso's emotional recovery began when he was able to write about the experience. "I spent days in front of the computer," he said. "Afterward, the memories were not nearly as hurtful."

"People ask me when I give presentations and show them the photos, how I can talk about this so nonchalantly," said Marso. "Because I have gone through the black periods. I relived them and put them on paper and got them out of my system."

On the right hand he has a functional thumb, which is smaller than it used to be because of a damaged joint, and part of a ring and middle finger. Fortunately, he is right-handed. On his left hand, he has the nub of a thumb.

"I can hold a pencil and grip something small," he said. "I use my right hand to do most everything. If I've got a glass without a handle, I use two hands. But I have to tip my mouth like an infant."

Marso refuses to use prosthetics. "I tried it and it wasn't comfortable for me," he said. "It also covers up what is left of my left hand and I don't have any sensation."

His life is different, but Marso said in many ways it is better than before. For one, he is closer to his family. His parents and grandmother moved to Kansas from Minnesota for a year to help with his medical care. Marso's brother transferred to University of Kansas to be nearby.

"Everybody rallied," he said. "My friends totally supported me and visited my in the hospital in a daily basis. That is what I was living for."