Wednesday, December 09, 2009

The Iron Man: A Meningitis Miracle

How I beat a disease that almost killed me.

By Mike LaForgia, as told to Irene S. Levine, PhD From Reader's Digest

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.

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.

Last-Ditch Effort
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. 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.

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 Help

Donna 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

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.

Comments :
By C Evans, 10/15/2009, 6:45 PM EDT
My father died November 1990 of Septic/Meningitis, the only thing he had did was he had just taken a flu shot.Can you please tell me if the iron man in this article had a flu shot. I know of another case where a young man had also just had a flu shot and developed meningitis and died.I will never have a flu shot but I am interested to know if this is more common then we know. Thanks you, for sharing this story. C Evans

By blevinse, 09/04/2008, 3:48 PM EDT
This story mirrors one that, sadly, did not end in a miracle. My 39-year-old brother died in the ICU from sepsis. His symptoms were identical. It appeared to be the flu. These strains of infection are very deadly, yet we seldom hear about them. It was, and continues to be, a shock to our family.

Information on Meningitis from

Last year, 850 United States citizens woke up with a slightly stiff neck and the hint of a headache. A day or so later, they contracted a fever. Four days later, the individual is experiencing insensate vomiting and even the occasional seizure. Two weeks, after all the symptoms began; they are dead. This is the haunting journey of meningitis; a disease which claims over 200,000 deaths a year.

1. Meningitis is fast acting infection, which mainly affects children and individuals with a weak immune system. There are two separate kinds of meningitis; viral and bacterial. Viral meningitis is actually quite common. Although in rare cases, it has caused fevers and seizures, it is not a serious illness. Bacterial meningitis, on the other hand, is an extremely serious disease. If not immediately treated, the disease can cause brain damage, and death.

2. The disease, Meningitis, is an inflammation in lining of the spine and the brain.

3. The bacteria surrounding the cause of bacterial meningitis are very common. Each bacteria, can be naturally be found in the nose and throat, in mainly young adults and children. The Meningitis bacteria is spread through coughing, sneezing, and kissing. It is extremely rare that the bacteria actually becomes viral; damaging the immune system.

4. Initially, the symptoms of meningitis will be directly correlated to the inflammation (eg. stiff neck or headaches). Eventually the individual will begin to experience vomiting, and even seizures.

5. If you or a loved one begins to experience symptoms of meningitis, make sure to contact a doctor immediately. Depending on whether the patient is a child or an adult, the doctor will prescribe a different injection. The meningitis C is the vaccination for children, and the pneumococcal vaccin, for adults.

Sunday, May 17, 2009

A Small Town Musician Becomes the Standard Bearer for Victims of Drug Company Negligence - Diana Winn Levine

—Diana Winn Levine

I lost my right hand due to a faulty prescription drug label. Now we may all be on the brink of losing our rights to hold drug companies accountable through the state court system when things go horribly wrong due to their products.

Wyeth v. Levine, which the U.S. Supreme Court has agreed to hear in November, is a case that has forced me into the position of defending the rights of all consumers against a pharmaceutical giant. Wyeth wants the court to decide that drug companies cannot be held accountable for their products – even when they hurt or kill someone – so long as those products have received FDA approval. If the Supreme Court accepts Wyeth’s claims that the approval of the FDA, however ill-informed in this instance, trumps the judgment of a citizen jury regarding corporate negligence, it will be upending a very basic foundation of justice in this country. Such a result could make the big drug companies — and, by extension, all other regulated companies — immune to all future claims by injured parties.

How It All Came To This
In April 2000, I went to my local health clinic in Plainfield, Vermont, suffering from a severe migraine. There a physician’s assistant gave me a shot of Demerol for the pain and, to curb the nausea, an IV injection of Phenergan, a drug made by the major pharmaceutical company Wyeth. While it was administered in a way allowed by Wyeth, per the instructions on their labeling for the drug, the Phenergan entered my artery rather than my vein. The consequence of this simple mishap? — within six weeks my right hand had turned black, swollen up, and died. I went through two amputations and ended up losing my right hand and forearm.

This would have been devastating for anybody. It was catastrophic for me. I had played bass, guitar and piano, and had been a professional musician for over 30 years. Up until that day I had an active performing career and a successful music production business. Music was my life.

It turns out that what happened to me was completely avoidable. Wyeth knew that Phenergan — the sole benefit of which is to prevent vomiting — can cause gangrene and tissue death if it is accidentally injected into an artery. This is possible if the drug is administered via the “IV-Push” method, as it was with me. And yet, inexplicably, the instructions that Wyeth provides with their product include this method as an option, along with other perfectly safe modes of administration. The company knew that a simple change in their instructions on how to administer the drug would prevent an injury like mine... knew it, and did nothing.

As a result of the loss of my hand, I suffered huge medical bills and a crippling blow to my music business. I decided to sue to try to recover some measure of compensation for all I had lost. Wyeth sent in five lawyers to defend themselves from my claim, but I and my local attorney helped the jury see that Wyeth was negligent and my loss avoidable; that they were knowingly providing their product with a label that could lead it to being administered in an extremely dangerous — and utterly unnecessary — manner.

Following the jury trial, Wyeth did not appeal the amount of the award or even the decision that it was at fault. Nor did they pay so much as a penny to help me recover from my injury. Instead, they pursued their position that, because the federal Food and Drug Administration had approved the informational label they were using for their drug, they could not be held accountable for any damages that resulted from following that label. Our Supreme Court in Vermont, like every other appeals court in America that has faced such a claim, rejected it. They affirmed that Wyeth is responsible for its own negligence, and that people can sue drug companies when their products cause injuries. Nevertheless, Wyeth appealed this decision to the U. S. Supreme Court. And stunningly, although the Court takes up just a tiny fraction of the cases that are submitted to it, they have decided to hear Wyeth’s appeal this fall.

This is deeply disturbing to me. For 70 years individuals have been able to seek compensation in cases like mine, and neither Congress nor the Courts have ever considered changing this fundamental rule. But now I am afraid that, in their willingness to review this case, the Supreme Court may be prepared to take a very radical step...

The FDA clearly did not appreciate the risks when it approved the label that Wyeth includes with Phenergan. But Wyeth did, which is why the jury found them responsible for the very real damage that resulted. I lost my right hand and my livelihood because of Wyeth — and if the mere fact of FDA oversight means that a company like Wyeth does not have to face the consequences of its own failings, that does not bode well for the future safety of any of us. I hope that the Court will reject this attempt to strip us of our rights, and leave intact the jury system for determining justice in matters of corporate negligence. And I hope my own disfigurement may serve as a reminder of what’s at stake.

Diana with sister Liz, daughter Jessamine, and attorney David Frederick at the Supreme Court, November 3, 2008
(photo by Gerald Herbert, Associated Press)

Diana Winn's recent Supreme Court Case

Diana Winn is a musician who lost her arm due to under-labeled migraine drug.
Follow link to story.

Wednesday, May 13, 2009


Hancock woman receives bionic arm

Surf's up, even for amputees

Surfing is an inclusive sport not limited to the young, tan, tall and lovely. All kinds of people get on surfboards and ride the waves -- even amputees.


Red Cross helps quake victims walk again!

Brothers' orthotics firm earns statewide honors

Paul and Edward De La Torre expanded the braces shop their parents started in the family's Hampton home in 1962 into an orthotics and prosthetics business that today has eight clinical offices, plus a headquarters and manufacturing site in Blawnox............................

Monday, May 11, 2009

Disabled Sports USA

What is Disabled Sports USA?
A national nonprofit, 501(c)(3), organization established in 1967 by disabled Vietnam veterans to serve the war injured. DS/USA now offers nationwide sports rehabilitation programs to anyone with a permanent disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events. Participants include those with visual impairments, amputations, spinal cord injury, dwarfism, multiple sclerosis, head injury, cerebral palsy, and other neuromuscular and orthopedic conditions.
This is a wonderful nonprofit with an on-line events calendar which is worth taking a good look at; they have sometime very just about everybody.
Happy Surfing!

Friday, May 08, 2009

Prosthetic Parity Signing Ceremony!

Governor O'Malley will be signing the Maryland Prosthetic Parity Bill into
law and he is holding a signing ceremony for everyone to attend! The
special signing ceremony will be held tomorrow morning, May 7, at 10 am in
the second floor of the Maryland House Building in Annapolis, Maryland.

Everyone is welcome to attend the ceremony and thank the Governor for making
prosthetic parity law in Maryland. This will help to provide amputees the
fair prosthetic coverage they deserve!

The address of the Maryland House Office Building is 6 Bladen Street,
Annapolis, Maryland.

The ceremony will not take long, but it will give us the opportunity to
thank the Governor and show everyone why this legislation is so important.
We hope you will be able to attend this wonderful event that will help
amputees throughout Maryland!

You can also contact Dan Ignaszewski at 202.742.1885 or if you have any questions or would like any
additional information.

PolyU garners more momentum in supporting reconstruction in Sichuan

The Hong Kong Polytechnic University has recently received a total of over HK$10 million in government funding to launch two training projects in Sichuan in support of rehabilitation and reconstruction in the areas stricken by the 512 earthquake.

Wednesday, May 06, 2009

AMNews: May 4, 2009


Medicare DME bidding program set to relaunch in 2010

The White House gives the green light to competitive bidding over vigorous objections from equipment suppliers and some lawmakers.

FDAnews Device Daily Bulletin

Competitive Bidding Program May Limit Access to Devices