SOUNDING OFF: A brush with deadly meningitis

On May 15 I was hospitalized with meningococcal meningitis.

It started with a dull headache I couldn’t shake but was not painful enough to keep me from normal activity.

Twenty-four hours later, I thought I was coming down with the flu. About 48 hours after that, I started vomiting and had diarrhea. I couldn’t keep a sip of water down and noticed strange spots on my feet.

By the time I realized I was in trouble, I was alone and collapsed reaching for the phone to call for help. I lay on the floor for the next day and half until I was discovered by friends.

When they found me, I was completely dehydrated. My feet and hands had swollen to three times their normal size. My eyes had rolled back and were gray, like a dead fish. My body was covered with purple spots. Blood was coming out of my mouth, nose and ears. When the paramedics arrived they had never seen anything like this. My vital signs were weak, and they didn’t think I would live more than 10 minutes.

I was rushed to Mission Hospital in Mission Viejo. The ER doctor recognized the problem and began tests, including a spinal tap, to confirm meningitis.

A recently approved antibiotic was injected into my jugular and pumped into my body for the next hour. I was quarantined and put on life support for the next couple of days. The advisory from the Centers for Disease Control was that everyone I had came in contact within the last 72 hours needed to be contacted immediately to prescribe a 500 mg dose of Cipro as a precaution.

I have very little memory of this. I remember people around me dressed in protective clothing, asking me whether I knew who they were. Their voices sounded familiar, but I was too delirious to identify them. I am told that I managed to write something that had to do with my work, but I have no recollection of this.

The next week was touch and go. The prognosis was that, if I survived, I would probably suffer brain damage; I could end up blind or deaf, and I could lose one or more limbs. Some of my friends who visited me have since told me they never thought I would survive because I looked so bad.

The pain I experienced was horrific. The sensitivity of my skin was so extreme it felt like razor blades slicing into me any time I was touched or from any vibration while being moved on a gurney. It took weeks before my hands and arms started to function properly from my extreme dehydration.

The fever that contributed to my delirium varied from 100 to 104 degrees. My upper body was surrounded by ice packs, which also added to the pain of anything touching my skin. The doctors were concerned that the prolonged fever could affect my brain or increase the possibility of brain damage. It lasted on and off for two weeks.

The disease seemed to affect my lower body the most. My legs were paralyzed from the pain for weeks. For four weeks I couldn’t turn over in bed or push myself up in bed. I remember taking 30 minutes to move a quarter of an inch and breaking out in a sweat from all the effort it took. The rehab nurses had to visit me daily to exercise my limbs, and massage my hands and feet to keep the circulation flowing. The doctors were talking to me about the possibility of amputating my hands and feet if the damage was too severe. I couldn’t comprehend this, and maybe that was part of the recovery. I just didn’t accept the idea. I think it was a bit of subconscious healing that helped the recovery.

I’m not exactly clear when I stood for the first time but I think it was around week four. I remember feeling like nails were shot through the bottom of my feet into my legs, and I almost fainted.

I kept getting really bad headaches and had to endure numerous CAT scans and MRIs. The doctors wanted to be sure I wasn’t getting headaches from any traces of the disease so the next thing to do was to have another spinal tap. Spinal taps were necessary to check my spinal fluid for any traces of the disease. They insert a hypodermic needle into your back to draw the fluid. Very painful when you’re healthy. In the shape I was in, forget about it. I had very little appetite and was losing weight at the rate of about 10 pounds a week. I’m 6-feet tall and weighed 175 pounds before the disease. Five weeks into this I weighed 125 pounds. My knees were bigger than my thighs and I had no calves. I looked like I had aged 20-plus years.

The first time I saw myself in a mirror was around week four, and I was shocked. I have to hand it to my friends and family for keeping their game face on and not showing how bad I looked. At four weeks, they said I looked a lot better than I had a couple of weeks prior. I was discharged June 23. I was re-admitted to the hospital the next day because we couldn’t break my 104 degree fever. It finally broke the next afternoon and I was released again to return home. Still too weak to walk, I was bedridden for the next few days.

I stopped all the medications cold turkey and started taking OPC-3 (an antioxidant-vitamin-mineral drink derived from grape seeds) and a concentrated form of B12 in water. I started walking a few steps to the restroom and then to the kitchen, etc. Little by little, I kept getting stronger. Distance was a problem, as was balance, so a walker was essential.

Progress came slowly. Having a strong support system was important. Sometimes I felt so alone. My family and friends made a difference. The experience has had a profound impact on how I view the world. I appreciate life so much, in such a different way, it is difficult to put into words.

My weight started coming back over the next three to four months. It’s been 10 months now, and I have all my weight back plus 10 pounds. I have joint pain but it’s not chronic. I have a few scars on my legs and feet. The scars are tender to touch, and I get a tingly sensation as if my feet were asleep, which is a bit painful.

I’ve recently gone back to the gym, and everything seems to be working pretty normally. I still feel stiff in my knees, ankles, feet and elbows. I’ve been tested for rheumatoid arthritis, and it is negative. I feel stiff the most when I’ve been sitting, standing or lying down for more than 20 minutes. Fatigue is still an issue, but it is improving. There is no evidence of damage to my fingers and toes, hearing, eye sight or brain function. If you met me today you wouldn’t know I suffered from this, and people are shocked to hear how bad it got. I called the CDC to ask, “Why me?” I was running three days a week and working out at the gym. I was in great shape. I hadn’t been physical with anyone, nor had I shared food or drink with anyone. I wasn’t in a foreign country or anywhere exotic. I was simply going from my office in Irvine, 13 miles away, then back to my home in Laguna Beach.

Their answer was that it was a freak thing. Three to five people in all of Orange County had been reported with it in the last five years. Last year when I got it, seven cases had been reported by June, double that number.

For more information visit www.fightmeningitis.com.

ROGER HAMPTON lives in Laguna Beach.