Winning a Life-Threatening Battle Against a Rare Disease

Posted by Jeff Meade on Jul 20, 2016 3:41:26 PM

murken_family.png(Pictured from left: Rita, Stephen, Bob and Stephanie Murken)

It started on March 27, Easter Sunday, with what seemed like a bad case of the flu. Though he could not have known it at the time, Roxborough attorney Bob Murken was about to come dangerously close to death.

 “It was nondescript,” Murken, 41, recalls. “It wasn’t clear what was going on. I had a big fever and I just felt terrible and I went to bed. When I got up the next morning, I didn’t want to go to work—and it takes a lot to keep me from going to work. (Murken is director of legislative affairs in Philadelphia Mayor James Kenney’s office.) I was just taking Advil and taking my temperature and staying in bed, figuring I’d get over it. I started getting these really high fevers—like 103 and 104.”

Murken called his doctor, who told him to keep in touch and to call back if his symptoms didn’t improve. And then she asked: Do you have any other symptoms?

“I said, ‘Oh, yeah, I have this funny pain in my right leg. It could just be a muscle pull. It’s not all that bad.”

That “muscle pull” became much more painful over the next few days, and the flu-like symptoms resisted all conventional treatments. Four days after Murken’s sickness started, he arrived at the emergency department at Einstein Medical Center Philadelphia in terrible shape. By then, he was in multisystem failure.

The diagnosis came quickly, and it was a shock: necrotizing fasciitis, also known as flesh-eating bacteria.

Murken had visited emergency rooms a few times before, he says, typically for something minor, like stitches. This time, his symptoms were worrisome enough that, he says, “I was in an ER bed in record time.”

That, he remembers, is when “things started getting hazy on me, but from what they told me, my kidneys were failing. My liver was looking funny. I was septic. I remember at one point that I needed oxygen.”

Enter Mark J. Kaplan, MD, associate chairman of the Department of Surgery and the chairman of the Division of Trauma/Surgical Intensive Care Unit. Kaplan was on call that night for acute care and trauma.

Kaplan_200x230-1.jpg   Mark Kaplan, MD

“They gave me his history, and there didn’t seem to be anything special about it,” Dr. Kaplan says. At the same time, lab tests showed that Murken had very low sodium levels, which can be an indication of necrotizing fasciitis. “But the tipoff,” says Dr. Kaplan, “was that he had this pain and this funny-looking skin on his leg. It was a grayish color.”

Necrotizing fasciitis is a rare disease, and extremely rare in a young, healthy person like Murken, Dr. Kaplan says. Fewer than 1,000 cases are reported in the United States annually, according to the Centers for Disease Control and Prevention (CDC). Roughly 73 percent of people who are infected with it die because the bacteria that destroy the body’s soft tissue spread and attack vital organs.

“You die of multisystem failure,” says Dr. Kaplan, and this (Murken) is someone who was already festering for days and days. The reason why people get into trouble is that all of these toxins get absorbed into their body. That’s what kills them.”

At the same time, Dr. Kaplan had seen cases of necrotizing fasciitis often enough that the diagnosis was clear.

Most commonly, the disease shows up in patients with conditions like diabetes, who already have weakened immune systems and open ulcers or sores. The bacteria in question enter the body through such openings, though they can also invade through something as small as an insect bite. How Murken contracted the disease, says Dr. Kaplan, is a mystery, 

Dr. Kaplan performed emergency surgery, debriding the infected area of Murken’s leg—removing the diseased tissue—leaving Murken with a 4- by 10-inch wound in his thigh.

But that wasn’t the end of Murken’s ordeal. He underwent several additional surgeries as the week went on to be sure all of the diseased tissue had been removed, to repair the femoral artery and the muscle around it, and to put an artificial skin graft over his wound.  He later received another skin graft as an outpatient.

Between surgeries, a device called a V.A.C. Instill was placed in the wound site to deliver antibiotics and suction out toxins. “It’s been around forever,” says. Dr. Kaplan. “[Einstein is] recognized for our expertise in using this therapy.”

Murken recalls waking up from the first surgery. “I peeked under the covers, and there’s this black thing like a plug stuck in my leg, covered with plastic, with tubes coming out of it,” he says. “I thought, oh my god, what’s that?”

He spent six days in the surgical intensive care unit, and another week on the general medical floor.

Murken quickly accepted what was happening to him and also felt comfortable relying on his surgeon, the residents and his nurses. Dr. Kaplan credits Murken’s positive attitude with helping get through the string of surgeries and other treatments. And his patient had one other powerful motivation: Murken is an ardent cyclist. He wanted to be able to get back on his bicycle. He’s not quite there yet, but Dr. Kaplan has every expectation that he will be.

“He’s just a super guy,” says. Dr. Kaplan. “His attitude is what got him through this whole thing. All he wanted to do was get better. Anything I told him, he was listening. I just kept telling him I would do everything I could to get him on his bike again.”

Murken is father to an 8-year-old son, Stephen, and a daughter, Rita, 5. He is deeply aware of what he could have lost, and enormously appreciative of what he gained.

“I’m very happy not to be in a wheelchair or in the ground,” Murken says. “It wasn’t until toward the end of my hospitalization that I started to put it all together in my head. I had just escaped with my life. I thought, you need to step back and take an inventory of all the things you might not be having right now. That was one of the things I tried to focus on this past Father’s Day. There might not have been a Father’s Day at all.”

Topics: Diseases & Conditions

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Perspectives highlights the expertise and services provided by the physicians, specialists, nurses and other healthcare providers at Einstein Healthcare Network. Through this blog, we share information about new treatments and technologies, top-tier clinical teams and the day-to-day interactions that reinforce our commitment to delivering quality care with compassion. Here, you will also find practical advice for championing your health and wellness.

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