Survivor Stories

Scott Madsen

I contracted Meningococcal Meningitis on 3/11/87 at the age of 27. I had been doing my same daily routine for 3 weeks prior to getting sick. The night of 3/10/87 at 11pm, I started feeling a little dizzy and thought I might be coming down with a cold, so I went to bed with a large glass of water as I was feeling very thirsty. After about an 1/2 hour went by I was very thirsty again and asked my wife (now my ex) if she could get me another large glass of water, in which she did. I was still very thirsty after the second large glass and began to wonder why I seemed so dehydrated all of a sudden. At about 3am in the morning, I needed to use the restroom, and when I tried to get up, my head felt very very heavy thus I could barely straighten it up. When I finished using the restroom, I returned to bed and fell asleep till 7am the next morning, upon waking up I was completely paralyzed from the neck down and noticed my body was covered entirely with deep dark purple spots everywhere.

My wife called 911 in which they arrived within 3 minutes. They rushed me down to the local hospital where I met my personal doctor. The hospital had me there for over 4 hours and all my doctor could tell me was that I was very very sick and both he and the hospital had no idea what I had contracted. My doctor just told me that my white count was very close to 0. They decided to rush me down to the UC Med center's CICU by ambulance since it was faster than waiting for a life-flight helicopter to come up from Sacramento to the hospital and then turn around and fly me back down.

Once in CICU, the doctors immediately started a penicillin drip, and then proceeded to put me asleep. They said it was for my own benefit, even though I was completely and mentally alert as to what was going on. When I awoke 3 days later (which I still can't remember to this day) I saw my father looking at me saying "your going to be OK". I couldn't talk, write or do anything to vent what was on my mind. I thought I had passed away and this was all a dream. Then I noticed the ventilator tube in my mouth, the heart lung machine, and all the various lines connected to me.

My father told me that my heart had stopped along with both my kidneys, but they were able to get them re-started in time. Then he told me about what I can caught. Apparently when I contracted this bug, it put out a 5 county health warning from the CDC. My father went on to tell me they had to do a blood transfusion if I stood any chance of surviving. I was so angry that I couldn't voice my emotions in any manner.

When my disease specialist came in, he told me all about this bug and what my possibilities of living through it was. He told me that if I survived, I would be paralyzed from the waist down, lose both my right index finger and thumb and my second finger and thumb on my left hand, and would be on a dialysis machine for the rest of my life.

At that point, I did not want to live anymore. I told my dad that if this happens to help me in any way he could to terminate my life support system so I could pass away with some respect, but he was absolutely against that. So there I laid, in severe pain, not being able to move or do anything except asking the lord why?.

The treatment I got in CICU was exemplary. I was given 4 million units of penicillin every day for 2 weeks to kill this bug. After making certain the bug was dead and gone, they transferred me to the upper wing of the hospital where I underwent more terrifying problems.

They put me on a floor where there were AIDS patient's. I couldn't believe they did this knowing that I had very deep open wounds throughout my entire body. I raised holy "H" with the administrator's office trying to get myself transferred to another floor, but they said they were very busy and had no other beds available. I was fuming.

During my 3 week stay on this recovery floor was the worst nightmare anyone could have. I was left on an over-flowing bed pan for 30 minutes while the nurse sat at the nurses station doing paper work. My mother had yelled to them several times asking them to come help me get off this bed pan and clean me up. Finally with no luck from the nurse, she took it upon herself to help me. My treatment went on like this for 3 weeks!

When it came time to remove to ventilator from me, I almost choked to death on that little plastic bubble in my throat. The night before it was to be removed, I had to turn on my side to break loose some of the mucus etc that was in my lungs. When I turned over, a large portion had logged in my throat and was choking me to death since I was unable to breathe. After knocking down many machines in my room, trying to get someone's attention, since the hand buzzer had fallen on the ground, a nurse finally came in and re-attached the ventilator since I had pulled it half out trying to get air.

Well that little plastic bubble had logged in my throat in a spot where there was nothing they could do till the doctor came in the following morning at 8am. In the meantime, I was able to take very very small breath's only, since that bubble was now in a bad spot. I remember thinking to myself "great, I make it through the worst spot and now I'm going to suffocate on this stupid plastic bubble". Finally at about 8am, the doctor came in and had me cough at the same time he pulled on the tube and out it came.

He said I was very lucky I didn't choke to death. After that tube was out, I began to feel a little better since I was able to breathe off just the O2 mask at 100% oxygen. When they tried to drop it by 5%, I began to lose my breath, so they moved it back up to 100% for the next 3 days. Then finally I was able to ween myself off that darn thing and begin to concentrate on re-gaining the use of my legs.

Every time I tried to move my legs (with my hands) just over the edge of the bed, it caused immense pain, so the doctors tried to put me in a hot tub to see if the water would help. Thinking the water would make it easier for me to use my legs..WRONG! It still hurt terribly. They had put me on a $30,000 (the price back in 1987) special bed with air conditioning and heat hoping it would make me feel a little better, which it did to some degree.

When it was time to leave the hospital, 3 1/2 weeks later, I still had no use of my legs, but the doctor said it would be in my best interest (emotionally) to go back home. They called an ambulance to come pick me up and take me home.

It took me 3 months to learn to walk again, which during that time, I had many argument's with my wife in regards to giving me some help changing all my bandages. I got upset one day and crawled to my car, started it up and used my hands to push on my leg to operate the gas and brake pedal. I drove 100 Mile's down to Sacramento to my fathers house where upon arrival, the fuel pump went out when I was half way up the driveway.

I put the car in park and fell out of the door in a pool of blood, due to the long drive and sitting on those deep wounds. My dad came out and helped me to the couch in his living room where he changed my bandages for me while I was screaming in pain with my head buried in a pillow.

To this day, the residual effects are getting worse and worse. I can't tolerate any heat above 75 degrees or I burn up internally due to the enormous loss of lymph nodes, and my memory is getting worse too. I also have Central Nervous System damage in which I get uncontrollable shakes in my hands, and I also developed foot drop on my right foot. I can't pull up my great toe either, all I have is a little downward pressure. I lost my right index finger, severe nerve damage on my left hand, second finger and thumb. Advanced arthritis in my back and left shoulder, Chronic Fatigue Syndrome, and a failed spinal fusion L4-L5, with L5 being on the verge of rupture now.

If my story can help just one person out there deal with the residual effects a little bit better, then it was well worth telling my story. I am normally not the type of person to go into such details as I have here. If anyone needs someone to talk to, PLEASE send me an e-mail and we will just talk with hopes of making life a little bit easier.

My e-mail address is cobragt87@cox.net

Update 2006:
As for updates on how I am. I still can't tolerate any heat. As a matter of fact. The range is very narrow now (70-75 degrees). I still get terrible shakes in both hands & arms. The scars have faded a lot, but they burn and tear very very easily, so I stay away from the sun from 11am till 7pm during spring & summer. The fall & winter are the best times for me to go out. It's been very hard for me to get anything done now. I have moved to Surprise, AZ where I bought a house in 2/2004 and it was completed in Sept 2004. It's a brand new home and we moved in on Sept 15th 2004. I took a big risk moving here due to the huge high temps here, but the houses were so cheap that I thought we could make some money plus finally own my own home.

I just don't know how long I can take the heat here. At least the humidity is very low (3-5% humidity) during the summer so I don't sweat near as much compared to Sacramento where the temps hit 105* and 35% humidity which makes it muggy. Here the temps have hit 113* but with the low humidity it's just very hot to the body, The homes are 30% more efficient here and it has a very nice central air condition system, But because I have to keep the house at no higher than 75*, it makes for a very high electric bill. My back is just shot. I now have to take Morphine "MSIR" ( 6 30mg tabs a day) to keep the pain in check. I hate having to take anything, but it's the only way I can tolerate the pain. Surgery is just out of the question. I did find an excellent doctor out here who is very much concerned about my health as I have very difficult problems with sleep, stress, nerves. I just can't relax anymore and that makes it so hard to sleep. I can't shut my mind down now. My nerves are also shot and the meds don't help much at all. This illness still has devastating effects on me as you can see. My doctor just told me last week that 2 of his patients had caught BM and they were rushed off to the hospital. He didn't know yet if their ok or not. I wanted to forward him my story to help him and other doctors & hospitals here what to look out for and to take it very seriously. I want to try and help my doctor in any way I can. He's an osteopathic Dr.

I have fallen many times seriously and it's just made my back that much worse. I also caught walking pneumonia 3 times since I moved here but I had some penicillin tabs here which stopped it in time before it got out of hand (I've always been susceptible to walking pneumonia since I got sick with BM).

I still take life one day at a time as things seem to change to fast for me.

Scott Madsen

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