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Sun February 16, 2014
'Worth The Pain': A Life Transformed Overnight By Meningitis
Originally published on Sun February 23, 2014 11:49 am
Students at Princeton University and the University of California, Santa Barbara, are still on alert after outbreaks bacterial meningitis late in 2013.
This type of meningitis is known as serogroup B — a strain that's not guarded against in the vaccine that most college students take. These outbreaks were so serious that the Food and Drug Administration allowed the use of a vaccine that's not yet approved in the United States. The schools will start administering the second round of vaccines this month.
Eight students came down with the disease at Princeton, four at U.C. Santa Barbara. One of them, a freshman lacrosse player, had both feet amputated.
'Fighting For My Life'
Andy Marso contracted meningitis B in April 2004. He was just three weeks away from graduating from the University of Kansas.
"Overnight I went from healthy, 22-year-old college student, to intensive care, on a ventilator, lungs failing, fighting for my life," Marso tells NPR's Arun Rath.
After going to bed one night with flu-like symptoms, Marso woke up the next morning unable to walk, with a rash on his arms.
This form of meningitis causes blood poisoning. The bacteria was releasing toxins that burned holes in his blood vessels. The rash on his arms, was actually lots of little bruises. For three weeks after he came down with the disease, he was put into a medically induced coma to allow his body to heal.
This wasn't an outbreak: The University of Kansas went to great lengths to make sure anyone who had contact with Marso got preventative antibiotics.
"By the time I woke up three weeks later, my limbs were rotting while still attached to my body," he says.
He woke up to see his limbs covered in bandages.
"The doctors ... tried to prepare me," says Marso. "They told me, 'You have tissue damage equal to third-degree burns over 30 percent of your body.'
"But nothing that they tell you can prepare you for when they take those bandages off and you see your limbs have turned black ... and your fingers and toes are curling up and dying while still attached to you."
Writing Through Recovery
Marso underwent weeks of aggressive burn treatments that involved cutting through the dead skin until blood is drawn, "because at that point they know they've reached something that's still alive," Marso says.
In the end, he lost all of his toes and all of his fingers, except for his right thumb.
He taught himself to hold a pen and write again. To type, he uses his right thumb and the "nub" of his left thumb. "What I like to tell people is that my brain holds me back more than my hands at this point when I'm writing," says Marso, now a reporter with the Topeka Capital-Journal in Kansas.
"I had nightmares about it for months afterward, and really the nightmares ended when I started writing about it," he says.
Last year, Marso published a book about the ordeal, Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better.
Marso says that, in a way, having this happen right before he graduated and entered the real world was good for him. "I had never been tested of challenged growing up — even throughout school," he says.
He says the experience gave him more empathy and made him a better journalist.
"I've already been laid off once and, you know, getting through that experience I think stemmed a lot from going through that process of rehab and learning to walk again," he says.
Marso says it also inspired good in the world around him.
"There was so much compassion that poured out towards me because I was going through this pain," Marso says. "So, if you look at it from the broader perspective — not from the self-centered, 'Why me?' perspective — then you get the sense that this really was worth the pain."
ARUN RATH, HOST:
Students are still on alert at Princeton University and the University of California in Santa Barbara after outbreaks of bacterial meningitis there late last year. Most college students get a meningitis vaccine, but it doesn't protect against this particular strain, meningitis B. These recent outbreaks were so serious, the FDA allowed the use of a vaccine that's not been approved in the U.S. The schools will administer a second dose of the vaccine in the coming weeks.
Meningitis B causes blood poisoning, which can be devastating. The bacteria releases toxins that attack blood vessels and destroy circulation.
Andy Marso knows this all too well. Ten years ago, he was a senior at the University of Kansas just weeks from graduation when he says he started to feel a little unwell.
ANDY MARSO: I was working part time covering high school sports, and I was out at a softball game the night before. And I had to leave early because I started to get flu-like symptoms. And it came on pretty suddenly, the cold sweats, the nausea, the high temperatures. I'd decided I was just going to go to bed, and then if I still felt sick the next morning, I would go to the doctor.
RATH: By the next morning, Andy couldn't walk. His arms were covered with a strange purple rash.
MARSO: I just wanted to stay in bed that morning. And if I had done that, I almost certainly would have died.
RATH: A friend insisted on taking him to the campus health center. He was immediately airlifted to a hospital in Kansas City.
MARSO: I blacked out when we got there, and I don't remember much of the next three weeks. Overnight, I went from healthy 22-year-old college student to intensive care, on a ventilator, lungs failing, fighting for my life.
RATH: This didn't turn into an outbreak. The University of Kansas went to great lengths to make sure anyone who had contact with Andy got preventative antibiotics. Andy was put into a medically induced coma for three weeks to allow his body to heal.
MARSO: The bacteria was releasing toxins that was burning thousands of tiny holes in my blood vessels. And that rash I saw on my arms was actually just thousands of little bruises. And so I was losing circulation not only to my organs, but also to my extremities. And so by the time I woke up three weeks later, my limbs were literally rotting while still attached to my body.
RATH: That's what you woke up to, seeing your body in that condition, your extremities...
MARSO: Exactly. I didn't see it initially because my arms and legs were covered in bandages. And the doctors, you know, they tried to prepare me, and they told me, you have tissue damage equal to third-degree burns over 30 percent of your body. But, you know, nothing that they tell you can prepare you for when they take those bandages off and you see your limbs have turned black. I mean - and your fingers and toes are curling up and dying while still attached to you.
At that point, it's dealing with this tissue damage. And the question is, how much of your limbs are going to have to be amputated, how much can be saved if you do aggressive burn treatments? And the aggressive burn treatments - basically, they just wet down that dead skin and they start slicing into it until you bleed. Because at that point, they know they've reached something that's still alive.
And so I went through weeks and weeks of those treatments to try and save as much of my limbs as possible. And in the end, I lost the front half of both feet. So all my toes are gone. And I lost all of my fingers, except my right thumb.
RATH: It just sounds like the most just hideous thing to go through.
MARSO: It's incredibly traumatic. I mean, I had nightmares about it for months afterwards. And really, the nightmares ended when I started writing about it.
RATH: The timing seems so dreadful as well, looking at this from the outside. You're about to enter the real world. And how did that change your sense of what your plans were going to be from that point?
MARSO: In a way, the timing was really good for me because I had never really been tested or challenged growing up, even throughout school. It prepared me for a career in journalism. I've already been laid off once. And, you know, getting through that experience, I think, stemmed a lot from going through that process of rehab and learning to walk again and learning to function again, which was very much like two steps forward, one step back.
RATH: As a working journalist, you lost all of your fingers. You just have one thumb. So how do you work with your disability dealing with the writing and that sort of thing?
MARSO: I taught myself to hold the pen and write again. And I did a lot of that from my wheelchair that first year out of the hospital. And then as far as typing, I use my right thumb, and I have a little nub of my left thumb, and I just kind of peck away at the keys with those two thumbs. And what I like to tell people is that my brain holds me back more than my hands at this point when I'm writing. So...
RATH: So the title of your book, "How Meningitis Nearly Killed Me - Then Changed My Life for the Better." Can you talk about how it did change your life for the better and how you're doing now?
MARSO: Yeah. My basic goal in life before all of this happened was comfort. I wanted to be comfortable. While it may have been very difficult for me, I can see now that experiencing that pain made me a better person. And not only that, it created so much good in the world around me because there was so much compassion that poured out towards me because I was going through this pain.
And so if you look at it from that broader perspective, not from the self-centered-why-me perspective, then you get the sense that, you know, this really was worth the pain. It was rewarding.
RATH: Andy Marso is a reporter for the Topeka Capital-Journal. His book is called "Worth the Pain: How Meningitis Nearly Killed Me - Then Changed My Life for the Better." Andy, thank you.
MARSO: Well, thank you. Transcript provided by NPR, Copyright NPR.