Fighting a Rare and Deadly Disease
I hold a special place in my close-knit Italian family. At 42, I'm the baby brother of three older sisters. My folks retired to Maine more than 20 years ago, and two of my sisters followed them. Since then, all of us get together with our families each year after Christmas Day. My wife, Donna, and I drive up and rent a big hotel suite in the coastal community of South Portland, where about 20 of us have dinner and usher in the New Year.
Mike LaForgia was not only on his feet again only six months after surgery, but he was running with the help of high-tech prosthetics.
On December 31, 2004, after dinner, we were swimming in the indoor pool, just fooling around, playing hide-and-seek and having fun. At midnight, we gathered around the TV to watch the ball drop, kissed and hugged, and said goodbye to those who were leaving. Donna and I were exhausted after we got the kids to bed. Nine-year-old Michael and six-year-old Jenna had made the trip (12-year-old Kaelyn lives in Georgia with her mom). I think we fell asleep the minute we hit our pillows.
But I awoke just after 2 a.m. with what seemed like a nasty case of the flu. I had an excruciating headache and terrible chills. My body was shaking so violently that I was literally bouncing on the bed. Overcome by nausea, I spent the early-morning hours dragging back and forth to and from the bathroom.
We decided to cut our holiday short and head home to Smithtown, Long Island. Donna called my mom and dad to let them know that we were all leaving.
Donna loaded our bags into the SUV and got in the driver's seat while I sat next to her, knuckling down for the seven-hour trip. Michael, Jenna and our dog, Chip, a King Charles spaniel, were in the backseat. At one point, I threw up into a plastic bag. I knew it was horrifying for Donna and the kids to see me so sick and weak. I was an avid runner and athlete who prided himself in being strong and physically fit.
By the time we made it home, at around five that evening, I was barely able to drag myself upstairs to bed. It never occurred to us to go to a hospital, because we were so sure this was only the flu.
At about 2 a.m. on January 2, I woke up and headed for the bathroom. Donna must have been sleeping with one eye open. When I returned to bed, she turned a light on and was shocked to see deep purple blotches that looked like broken blood vessels all over my face. She quickly threw on some clothes and phoned her older brother to ask if he could stay with the kids. Soon I wasn't able to stand on my own, so my strong-willed five-foot-four wife heaped my 200-pound body on her back with strength even she didn't know she possessed and, like a firefighter, got me downstairs and into the car. We sped off to a local hospital.
Soon after we arrived, the ER staff tried hooking me up to IVs, but my veins kept collapsing and the staff couldn't insert the needles. My heartbeat and respiration were extremely rapid. A specialist was called to put in a central IV for antibiotics and fluids. The doctors didn't know what was wrong, but they wondered if I'd developed a pulmonary embolism as a result of the long car trip.
More specialists were called in around 4 a.m. as Donna and several nurses circled around, trying to make me more comfortable. Later that morning, I had a CAT scan, to look for an embolism, and a VQ scan, which shows whether blood is circulating freely through the lungs. The results of both were negative, but an echocardiogram showed some weakening of my heart. Suddenly I went into severe septic shock with multiple organ failure: My liver, kidneys and other organs were shutting down. Donna followed as I was wheeled into the ICU.
Last-Ditch Effort
A hematologist was brought in to consult. He told Donna that I had disseminated intravascular coagulation, or DIC, a condition that causes blood to coagulate irregularly, leading to bleeding throughout the body. Over the next week, Donna watched helplessly as my nose, arms and limbs all turned from purple to black. We later learned that this was my body's way of preserving the really important stuff, like my heart and brain, by decreasing the blood flow to my extremities. A staffer asked Donna, as my health care proxy, for permission to place me under heavy sedation and hook me up to a respirator to help me breathe more easily. She had no choice but to agree to what sounded like a last-ditch effort.
What a thrill to celebrate my recovery with Michael Jr. and Jenna over Italian food.
The rest of the LaForgia clan arrived from Maine by one that afternoon. Each person was allowed in my room for a few minutes before I was placed on the respirator. At four, the medical staff told Donna she had to leave while they got me ready. She kissed my cheek and whispered that she would be back soon. Most of my memories from then on are based on Donna's retelling of the story. One of the doctors told Donna there was nothing else they could do—and that I probably wouldn't make it through the night. Still, there was no definitive diagnosis of what had made a young, healthy man so sick in such a short time.
The only hope was to have me transferred to another hospital, though the staff felt strongly that I wouldn't survive the trip. They were willing to release me, but Donna had to be the one to find a hospital that would take someone so critically ill.
Scrambling for HelpDonna mobilized the group in the waiting room to contact different hospitals. But after learning of my vitals, none would accept me. My sister Teresa calls the waiting room scenario my "big fat Italian hospital scene." My sisters are very emotional, and they were all crying. Adding to the confusion, everyone had a different opinion about what to do next. Donna remained calm and steady, making one last call for advice to a doctor we knew, who suggested Stony Brook University Medical Center. The hospital sent an ambulance and rushed me to the ER.
Donna was told she couldn't go with me. What if I died in the ambulance, she worried, and she couldn't be with me at the end, holding my hand? By that time, Donna had been awake for more than 20 hours straight. When she arrived at the ER at 10:30 that night, she was totally exhausted and finally broke down crying.
At Stony Brook, several doctors examined me and reviewed my records. Things were so grim that they urged Donna to call a priest to administer last rites. They told her they weren't certain about what had caused the septic shock, but felt that rapid and aggressive treatment with antibiotics was the only way to face down the unknown attackers. Because of the DIC and the risk of uncontrolled bleeding, they'd been unable to do a spinal tap, which may have aided in making a conclusive diagnosis.
The IV fluids and the fact that my kidneys weren't working caused me to balloon more than 60 pounds overnight. Donna says I was completely unrecognizable. Every feature of my face was swollen—it looked like I was turned inside out.
My fever spiked to 105.7. Donna told me that one by one, family members came to say their farewells. After rubbing me down with alcohol, she and Teresa put chairs together in the waiting room to catch some sleep. Miraculously, I survived the night.
I remained in critical condition for the next seven days. I was placed on dialysis, and the doctors suspected that my kidney function wouldn't return. Donna and my family were worried about brain damage. The doctors were concerned that if I was lucky enough to survive, I'd lose my nose, hands and feet from the prolonged loss of blood flow.
On January 3, my second day at Stony Brook, the hospital asked for Donna's permission to use a special new medication to treat the inflammation from the infection that was raging through my bloodstream. She gave the go-ahead.
Out of The Dark
On January 9, after I'd spent eight days sedated with Donna at my bedside, suddenly I moved my arm. Excited, Donna took the movement as a sign that things had changed and that I might actually make it through this nightmare. The next morning, I opened my eyes for the first time. Two hours later, the respirator was removed, and I was breathing on my own.
No one is positive about what made me so sick or what finally triggered my recovery. But I now believe that I had meningococcal sepsis, also called meningococcemia, a bacterial infection of the blood that is frequently hard to diagnose and difficult to treat. Although my doctors at Stony Brook had no way to confirm it definitively, they do say the infection was aggressive enough to have been this type of rare and often deadly meningitis. I remained in the hospital for two months and spent five more months in physical rehab.
Because I'd been a runner and triathlete since my early 30s, I was in excellent condition, and the doctors say that contributed to my ability to recover. They were able to save my hands, although my nose has some scarring. I lost all the toes on both feet and the arch and heel of my right foot. On Valentine's Day, 2005, the doctors worked nine hours to use my right lat muscle to rebuild my right foot, which they covered with a skin graft from my thigh.
With great effort, I slowly progressed from a wheelchair to a walker, then to crutches and finally a cane. I left the hospital in March 2005, and in late May, I returned to work as a vice president and program manager for technology with JP MorganChase.
Since then, I've had several more reconstructive operations, including a knee surgery and a reduction of the right foot to help it to fit into a shoe. In the past, I'd completed two New York City marathons as well as a Half Ironman in Florida. But now I just dreamed of getting back into a pair of Nike sneakers for running, bike shoes for racing and dress shoes for work.
Before deciding on an elective amputation of my right leg in June 2006, I interviewed dozens of amputees, who convinced me that the operation would enhance my mobility and improve my quality of life. After the surgery, I was fitted with two customized running legs and a customized cycling prosthetic.
I'll never know exactly how I contracted meningococcemia. The evening before that New Year's Eve, we were in a crowded auditorium for a show with my family. It could have been something as innocuous as standing next to an asymptomatic infected person who coughed or sneezed on me in a crowded room.
One of the gifts that came from this vicious disease: I've achieved a better balance in my life, between work, home and community. Also, I always knew that Donna was a remarkably capable and strong woman. But after this experience, I realized that relationships aren't measured by just the good times. How you respond to great challenges, even to loss, can define a relationship. It certainly strengthened the already strong bond between us.
I've got my athletic spirit back, but now I compete in 10K's or triathlons to raise awareness and funding for challenged athletes. I'm also active on the advisory board of the National Meningitis Association, a nonprofit organization founded by five parents whose children died or live with permanent disabilities from the disease. If I can prevent one other person from suffering from this, it will be worth it. I also hope to use my return to running and biking to raise awareness about meningococcal disease and the new vaccine that can help prevent it.
For more information about the symptoms and effects of deadly meningococcal disease, who's at risk, and how you can prevent it with the vaccine, go to
rd.com/meningitis.
An Expert's View of This Case
This is a classic, not so rare, example of how tough it can be to definitively diagnose meningococcal disease. When someone has disseminated intravascular coagulation (DIC) and goes into septic shock, there is often no time to do a spinal tap. To preserve life, the acceptable medical practice is to administer broad-spectrum antibiotics as rapidly as possible," says Paul A. Offit, MD, chief of infectious diseases at the Children's Hospital of Philadelphia and author of
Vaccinated: One Man's Quest to Defeat the World’s Deadliest Diseases.
A New Way to Run:After additional elective amputations on both legs to improve his mobility, Mike LaForgia was not only on his feet again only six months after surgery, but he was running and cycling with the help of high-tech prosthetics. Erik Schaffer, CP (certified prosthetist), owner of A Step Ahead Prosthetics & Orthotics in Hicksville, New York, helped fit Mike with custom-fabricated carbon graphite legs that enable him to compete once again in running and triathlons. Mike is a member of Team A Step Ahead, a team of challenged athletes who receive specialized coaching and physical therapy from the company.
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