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Emily

Flick! The lights go on and I am instantly blinded. I don’t understand what is going on around me. Everything is so crazy, but all eyes seem to be focused on me. Sitting here I start to wonder, “How did I end up here?” After the lights go out, a doctor came in to ask questions, and meanwhile, my mom is on the phone with my family. Twenty-five minutes after the doctor has finished questioning me, a woman walks into my room and says “I’m here to bring you to your CAT scan”. As I am being rolled through a hospital corridor, I realize that that had been the most relaxing part of my day.

Sitting here I am able to rest without being bothered and I ignore the rest of the world. Sleeping in a hospital is not one of the best spots to choose, but it works for me. I am still in the dark when the doctors woke me up again; they say I need a lumbar puncture. At the moment I am unaware of what the doctor has just said, but as soon as I process it, I freak out. In general I fear needles, and to think that shortly there will be one in my spine kind of puts me into panic mode. Meanwhile, in the background, the doctor is listing all the possible issues that could come from it. Once I am able to calm down, they proceed with the lumbar puncture.

After about 30 minutes of uncontrollable muscle contractions due to the fact that my nerves being stimulated and my body going numb everywhere, I am able to relax again and the doctor say that the fluid looks healthy. Once I regain my strength back from all that has happened, I am given antibiotics to fight the illness, and then transferred to a second hospital in an ambulance. When I arrive, I am left all alone and scared.

All of a sudden, I feel as though I have just walked through a patch of poison ivy. My entire body is on fire and I know something is wrong. As soon as my mom arrives, she walks into my room, and then she walks right out. I am so confused about why she has left me. When she returns, she is followed by two doctors who immediately start to run tests on me. While everything was going on, I felt a painful burning sensation in my arm. I grab at my arm, but someone restricts my hand. The doctors say that I am having an allergic reaction to the antibiotics they have me on and that if they don’t get the medicine in body soon, that things could go terribly wrong.

When I wake up the next morning, the pediatric neurologist orders more tests in order to figure out what is actually wrong with me. By now we have already figured out that I have meningitis, but the doctors are still unsure of what type of meningitis I have. Since it has yet to be discovered what type of meningitis I have, I am allowed to see very few visitors, and I am in quarantine. Once my sister and dad arrive, I have someone to entertain me in my hours of boredom.

When my sister leaves with my dad to go home, the doctor comes and tells me that they have figured out what type of meningitis I have acquired. I am told it is enterovirus meningitis, which has to cure and run its course and that I am not contagious. I am relieved to find this out seeing that enterovirus meningitis is not nearly as harmful and deadly as bacterial meningitis. From here I know I will be able to leave soon because it is no longer necessary for medical attention. Around twelve, on my third day of being in a hospital, I am released. After being released, I am told I was not allowed to attend school three days and luckily, that ends two days before school starts. Yay! I get to go to school…

Mike

In March 2012 I was at the gym and slipped in the steam-room hitting my head.  I passed out for a few minutes but eventually made it to the hospital.  Three months later I was slowly riding my bike when a pedestrian stepped in front of me and grabbed my handlebars, I fell, hit my head and fractured my hip and pelvis.  That summer I inexplicably broke out in hives all over my body.  By November I was fatigued, running a low fever.  I went to the doctor several times.  He couldn’t find much wrong with me.  A few days later I was still sick so I went back, they took blood and the next morning I got a call telling me to get to the emergency room as soon as possible, my white blood count was dangerously high.

I remember having a terrible fever in the ER, it hit 105.9.  My eyes were unfocused and I wasn’t able to respond to simple commands.   My respiration rate became irregular. That’s the last thing I remember.

I fell into a coma for two weeks.

I was given a tracheotomy and put on a ventilator.  A few of the doctors in the medical intensive care unit in New York City’s Beth Israel hospital told my wife and children to think about funeral arrangements.  They did not think I could possibly survive.  My sodium levels sky-rocketed.  My organs failed.  I was diagnosed with tubercular meningitis.

I finally started responding to aggressive treatments but was still in a coma.

When I started to wake up my family realized I had lost my hearing.  I could not walk, I could not lift my arms or legs, I was filled with fluid and had bedsores which took almost a year to fully heal.

Six weeks after entering the hospital I was delirious.

Then began eight weeks as an inpatient at a rehab facility in New Jersey where they taught me to sit-up again, stand, and finally walk although with a severe limp.

I began my new life in silence, but at least I was able to interact with my family.  They would type messages on computer screens and iPads to explain what happened to me.

I don’t remember everything but I do remember the terrible nightmares, doctors later told me they were probably caused by the powerful doses of medication I was on to fight off whatever had infected my body and brain.

In one dream I was in the basement where I watched patients being dismembered and incinerated.  On another occasion I was held captive on a Japanese submarine on the way to attack Pearl Harbor.  I tried to escape but was recaptured and dumped in a storeroom with rats.  I was so confused when I was awake I thought I was in Europe then Central America.  I even tried to communicate with doctors and staff-members in Spanish.

I tried to escape.  I got out of bed, took one step and collapsed when my right leg gave out.  I fractured my coccyx which caused me a lot of pain for the next few months.  I woke up back in bed with thick cloth mittens on my hands and a strap around my waist holding me in bed.  Another escape attempt led me to attack the valves above my bed.  After that I had an attendant watching me 24-7.  My hands were encased in canvas mittens that were taped on so I could not remove them. It also helped me avoid scratching a terrible rash that covered my entire body.

Eight weeks later I was finally able to go home.  It took a while but I was able to get into an outpatient rehab program near home in New York City.  A few months later I was able to get cochlear implants which work very well, but it’s not a full substitute for true hearing, sound is metallic but I’m getting used to it.

My new life consisted of visits to physicians as well as physical therapy.  Dragging myself from one appointment to another tired me and left me more and more depressed, I always hated going to the doctor, now it was the only thing I did.  When I began going to those appointments I was in a wheelchair.  Eventually I was able to use a cane, now I’m able to walk without one albeit awkwardly.

I am severely depressed.  I had just retired from my job as an Administrative Law Judge before getting sick.  I was very active embarking on 100 mile bike rides several times a week.

My short-term memory has been affected along with my decision making skills.  I am no longer fully in charge of my finances and I need help keeping track of bills.

In September 2013 I began a program to help me understand there are ways to compensate for my cognitive limitations.  At first I thought the program would help me regain my lost competencies.  I soon learned that this would not happen.  Instead I must accept that although what was lost is gone, I can learn to use other methods to manage my life.  The main goal is to make a written record of events that occurred each day as well as a schedule of what I am planning to do in the future so I can refer to it and be organized.  I need written reminders to help me with my daily exercises, appointments and just about everything.

My calendar and notepad are to become my “auxiliary memory.”  While I understand the logic of this method, at my age I find it difficult to implement even though it works.  I have begun to record my activities and future obligations so I can refer to this log several times a day.  I am trying to help myself and free my family from constantly answering the same questions.  It is a difficult process that I will probably never master completely.

My life is difficult and much different than I expected.  Despite my fondest hopes I have begun to accept that I can never go back.  I must try every day to keep going forward.  When I forget this, I am gently reminded by my family that I have a future, and it is here with them.

While this of course has been a terrible experience for all of us I am proof that some people can survive this.  My life will be much different than I would have ever imagined however I know it can still be meaningful.

Joe

On July 11, 2011, feeling nothing worse than a bad cold, I became ill with meningococcal infection and eventually fell victim to septic shock, and nearly died.

For me, the journey began on a Thursday – June 24, 2011 – in Albany, when I underwent a significant amount of dental work. What was intended to be a protracted procedure scheduled over several weeks was instead accomplished by two different dentists in approximately two hours.

Two days later, a process which seemed to cause me no problems in the short run was now the source of great pain.

By Saturday night, the pain became excruciating, and on Sunday morning, I called the dentist for direction on what to do next, and he prescribed an antibiotic. By this time, I was alternating fever and chills. I spent the next four or five hours passed out, and when I awoke, I had an abscess the size of a Chiclet on the roof of my mouth.

On Monday morning, June 28, I awoke, feeling well enough to go to work, though the Chiclet remained. I kept in contact with the dentist office receptionists, conveying my concern and discomfort from the abscess, but was told not to worry.

On Sunday, July 3, I left on a weeklong work trip to San Francisco and Berkeley, the bump still very much prominent, and I had to learn to speak and eat around it.

I felt fine all week – well, nearly so, just some sniffles but nothing to be concerned about, and I had full days of face-to-face interviews followed by restful nights of adequate sleep.

I left the Bay Area on Sunday afternoon, July 10, arriving in Albany 1:30 a.m. Monday morning. I went to bed feeling like I definitely had a cold, but nothing like the agony of two weeks prior.

That morning – Monday, July 11 – 17 days after the initial dental work – I awoke with a much worse “cold”. I had planned to work from home, but found myself able only to check my email and prepare to leave for the endodontist for an 11 a.m. check-up. I thought nothing of driving myself to the dentist, but remember nothing of the visit, or of the drive home, except that I had to stop on the way; I couldn’t make the 10 to 12 minute drive through city streets – and I didn’t find that unusual.

Obviously, I wasn’t clear-thinking or I would have realized that anyone unable to attend to such a small task must be really sick. I went home, threw myself on the bed of my second story Albany bedroom, and fell asleep for the next seven hours.

My mother, who lives in Utica, had apparently been trying to reach me by telephone all day, and when I didn’t answer, she sensed something was wrong. She tried unsuccessfully to reach my neighbors, and eventually reached a friend who shared her concern – and premonition – and drove the 25-30 minutes to my house to check on me.

The door to the house was locked, but the car was parked in front, indicating I was home, so he repeatedly called up to my bedroom window until miraculously, I awakened and –remarkably- walked down a flight of stairs to let him in and then walked back up again to return to my bed. I was totally exhausted, and apparently, he was confident that I needed immediate help. My friend insisted, thankfully, on calling the EMTs, who took me to a nearby hospital.

I might have waited longer except my friend called my primary doctor, also a friend, who in turn called the ER and insisted that a doctor see me immediately.

That changed everything, or so I’m told. Upon close observation, it was clear that I was in severe sepsis, and my body was experiencing septic shock – a severe drop in blood pressure.

Now, Doctors and IVs were flying everywhere, and my friend was told that he should “notify the family immediately,” as I might not last the night. I was on life support.

At first, the doctors didn’t know what kind of infection they were fighting, but it turned out it was a bacterial meningococcal infection – Neisseria meningitidis.

In the next few hours and days, lungs, kidneys, liver, heart – everything – failed.

Eight days later, I showed signs of a chance of survival. I was brought into consciousness. The ventilator tube was removed, and I started my climb back to life, spared the amputations, the blindness and all the other things that usually accompany this experience.

I spent 19 days in the Critical Care Unit, was discharged directly home, and started down the road to my recovery. In three months, I was back to working; lethargic, but working.

It’s been 21 months since the incident, and I’ve more or less returned to my normal state. I know this is not the norm, and I am very grateful. I hope to demonstrate my gratitude and appreciation by educating people on sepsis.