Thursday, October 11, 2007

Meningitis: My Story

The title sounds all dramatic doesn't it? I guess it is in a way. There are not many times in your life when a doctor tells you that you could have died right? So, here's the story, from the beginning...

Sunday, Sept 30th - I went into work for an hour and then came home. I was tired, but when am I NOT tired? We decided to go look at some houses because we so desperately want to get out of this house. It was supposed to be a quick trip but ended up being a couple of hours. Caroline was good up until the last hour and then started getting super fussy. I just wanted to go home. I felt like crap. We got home and Caroline had a fever of 102 degrees. Again. Random fevers happen quite a bit in our house. I gave her some Motrin and then sat on the couch and started getting chills. Turns out, I had a low grade fever too. I was up all night on the couch getting the chills and then waking up soaked in sweat.

Monday, October 1st - I went into work anyway and Caroline went to daycare. Neither one of us had a fever. She was acting fine too. I, on the other hand, still felt like crap. I'm pretty sure that I had fever on and off during the day. I took some Tylenol around lunchtime and then dripped in sweat later that afternoon. My neck was hurting a bit too. Monday afternoon was my first headache. Tylenol helped. Headaches are headaches in my world. I get them A LOT. As long as the Tylenol helps, I can handle it and move on.

Tuesday, October 2nd - A day full of extreme hot flashes and headaches. There were numerous jokes about me being pregnant or in early menopause. HA! People are comedians. I still felt better than I did on Monday.

Wednesday, October 3rd - I woke up with a little headache. Popped some Tylenol and went to work. I pretty much went downhill from there. By 3pm, I was sweating, couldn't concentrate on my computer, had already had 6 Tylenol with no relief from a headache and when people talked to me, it hurt worse. I started feeling nauseaous and made several trips to the bathroom just in case. Finally, at 430, I couldn't take it anymore. I stood up and said I don't feel good, I'm going home and just left. My friend Corie had visited me around 2:30 and she says now that I just wasn't myself...I barely made it home and took more Tylenol and just crashed into bed. I buried my head in a pillow and stuck another one over my head because light was starting to bother me now too. You know how you go to the doctor and they ask you to rate your pain 1-10? This headache was probably a 9. I wouldn't say 10, but truthfully, I'd never felt any pain like this before in my life. Hands down the worst headache I have ever had. I threw up a little that night and basically felt like I wanted to die. Really. I don't know how I fell asleep. I had taken all the Tylenol I could take so John ran up to the store and got some Aleve and some Mucinex. Maybe this was a really bad sinus headache. I don't remember if we actually verbalized what we thought it was...my tumor had to be growing. What else could it be?

Thursday, October 4th - I got up and took a shower, my headache was still there. I told John he was going to have to take Caroline to daycare and I wasn't going to work. I got her dressed, but lost my patience with her. I know she sensed something was wrong. I couldn't even be around her and she just cried and cried. I threw up twice that morning. Since I hadn't really eaten anything since lunchtime on Wednesday, it was mostly stomach acid. Yuck. By 10, my headache was still there and John convinced me to go to the CareNow Clinic. I did the Web Check in and still ended up waiting over an hour in the waiting room. Did I mention I drove myself? John was at school. I saw the doctor and she said I should probably go to the ER to get an MRI or CT scan because of my history and the fact that I was calling this longer than 24 hour headache with nausea and vomiting the worst one of my life. I arranged for Laura to pick up Caroline at daycare and John met me at home to drive me to the ER. I didn't have to wait long. I was surprised. I got an IV with Morphine and some Reglan. I threw up some more. I went for a CT and it came back normal per history. The doctor decided to do a lumbar puncture. I was not thrilled. Of course, I was trying to make jokes during all of this. I did feel better, but I was pretty heavily medicated. They did the LP and came back an hour later. Meningitis. WHAT?!?!?!? That was my reaction. The doctor had to say it more than once. I had white blood cells in my spinal fluid and some protein thing that I don't remember the name of and another thing that was making them think it might be bacterial meningitis. The bad one. I was admitted to the hospital and put in isolation. No one could come near me without gloves and a mask until the tests were conclusive. My first thoughts were of course of Caroline. God, I hope she didn't get this. She's so little. John is tough. He never gets sick, but I still hope he doesn't. And how the hell did I get this??? Seriously? I have no idea still. I got more morphine and was woken up periodically throughout the night for blood pressure and temp monitoring, lots and lots of blood draws and visits from the Internal Medicine doctor and the Infectious Disease doctor.

Friday, October 5th - By morning, they had determined that I had viral meningitis and told me I would be off isolation that afternoon. I talked to family and friends throughout the day. My parents ended up taking Caroline home with them on Thursday night. They kept her until Sunday. Laura was worried (and rightly so) about her and Austin. We had not seen each other, but she was in our house and drove my car, which she dubbed the "Meningitis Mobile" to pick up Caroline. Viral meningitis is not the contagious one, so we just had to keep an eye on those closest to me for any type of virus, like an ear infection. John went to school and I just hung out in my room all day. Since I got off isolation that night, we decided to have Mom and Dad bring Caroline up to see me. It was nice to see her, but I think she was scared.

My first IV had been put in the crook of my left arm and the IV stand alarm went off almost everytime I moved, so I asked them to move it on Friday night. I was on continuous IV antibiotics and fluids. I was also getting shots in my stomach to thin my blood. After several tries and one official blown IV, they stuck another one in my right forearm.

Saturday, October 6th - Still in the hospital. John spent the whole day with me. We had high hopes that I would get to go home today. Unfortunately, the headaches that I had started getting anytime I would sit or stand up were getting worse and my neck was hurting too. One of my blood tests showed that my potassium was low, so I had to take supplements for that. I felt like crap that day. But if I laid down, all was good. So, I just laid down. All the time. My IV started hurting and in aboout an hour, it had infiltrated. My arm was swollen, red, and hot. Numerous people tried to stick me again and it was decided that I was officially unstickable. The doctor agreed to DC (get rid of) my antibiotics. Thank God, because if I still had to have them, I might have had to have a central line. Not fun. So, Saturday night, I got to sleep without being connected to anything. Woohoo!!

Sunday, October 7th - The day of Laura's baby shower. We had already spoken about this starting on Friday and I told her to go ahead with it. Thank God it was more than just me hosting it. I'm so sorry I missed it. But, I got to go home!!!! I finally got discharged around 2 and my Dad brought me home. To my own bed. To my family. I was so happy. I got home and immediately laid down because my head was pounding. My daughter wanted absolutely nothing to do with me and decided that this was the perfect time to begin her Terrible Two's Tantrums. Don't things work out well?

Monday thru today - I've been trying to stay up longer everyday and as of right now, I have been upright for 2 hours and 40 minutes with no headache. I've taken a shower and put in a load of laundry. I think I could probably go back to work tomorrow, but it is Friday. What is the point? I'll just wait until I get an official all clear from my doctor on Monday and then go in. I feel pretty good. My head still occasionally hurts, but nothing bad. I get hot flashes if I need to lay down and my LP site itches a lot. But I am good. I survived "The Meningitis."

5 comments:

Andy said...

Wow, what a story, and you told it so well. I'm so sorry, what an awful thing to have to go through. I'm really glad you are feeling better - and don't you dare go to work tomorrow you crazy lady. Seriously, stay home until you are 100% better.

Kristin said...

Holycrap!! I'm so glad that you are better! You should stay home from work tomorrow silly girl!
You dont want to push it!

Anonymous said...

Recovery from the meningococcal meningitis and sepsis using 24 days therapeutic water fasting and Complimentary Medicine
Dr. Vladimir Etkin, MD, RUSSIA, Voronezh city, vld707@list.ru , Skype address vld707, http://naturopathy.mylivepage.ru/

I would like to share my story of success about my 24 day water fast while suffering from meningococcal meningitis plus meningococcemia (sepsis). In the winter of 1980 when I studied in Residency at Kursk Medical College on the general therapy of internal diseases, I gradually developed bad headaches which plagued me throughout the whole month, and I was also struck by a chronic cold. Almost two days went by before doctors were able to confirm my own diagnosis. (At first they thought I had gone mad!) Drifting in and out of consciousness I was in no state to discuss my condition with them even though I tried.

On one fine day-after five days of unconsciousness- I awoke with a sensation of unimaginable ease in my body. At the time it had not yet been established that the meningitis had caused edema on the brain. The day before my birthday my joints had swollen and became crimson: both talocrural and wrist, and joints on two fingers on the left hand were also affected. In the morning my body temperature was 37.5 C, and by the evening it had gone up to 39 C. For most of the night I felt drowsy and slept for only two to three hours due to the septic temperature (a septic polyarthritis).

The spinal lumbar punctures (they were seven in all during my illness) added to my misery as for almost 2 weeks I was not able to bend my waist as a nerve had been touched. Any attempt to bend led to piercing pains in my right leg. The lumbar punctures were a necessary evil as the doctors could only establish from an extraction of spinal fluid the true nature of the infection. Once this sample was analyzed the doctor informed me that he now knew how to proceed with the correct treatment.

My diagnosis sounded like a verdict: The residual phenomena meningococcal infections (meningitis and a sepsis) with the raised craniocereberal pressure, extrapyramidal disturbances (defeat subcrustal ganglia substances of a brain due to encephalitis) and fatigue syndrome.

Translated into ordinary language, it would mean: Constant headaches day and night which made me climb up the wall, 4 hours of hallucinations late at night, and awaking early with shaky legs, dizziness, weakness in the right hand and a leg. These symptoms increased with the change of weather, and I also experienced a constant tremor of head and painful spasms in leg muscles, decrease in memory and concentration, fatigue and emotional imbalance in the form of vulnerability, despondency's, depression, etc.

My speech was in no way impaired, and although I could read, the word meaning (semantics) was at times absent. It was necessary to re-read a text several times over in order to grasp the meaning. To write using a pen was a problem as the hand would simply not obey. The usual pen reminded me of a piece of a stiff piece of wood which was difficult to hold. This made the task of writing a difficult process. I knew when it was about to rain, because my right hand weakened, and the right leg stumbled a
little.
A doctor from the outpatient clinic where I was receiving treatment presented me with the first edition of "Fasting for the sake of health" by Professor Nikolaev.
In that hot summer of 1980, during the 24 day therapeutic water fast I lost at total of 16 kg, but the co-ordination of body movements was restored, the liver functions improved and consequently my complexion returned, and most importantly was the belief in my ability to make a full recovery!

Natilia said...

Hi,

Nicknamed, "The Iron Man", Mike LaForgia; not only battled and survived

meningitis within six months; he then went on to run (with prosthetic) to

raise awareness. It is often, common place to celebrate the survivor (as

well as it should be), but forget the ones who made it possible.

Organizations, such as yourself, who have conducted extensive research and

established events to raise awareness, are the catalyst for survivors such

as, Mike LaForgia. Disease.com (a non-profit, website dedicated to the

preventions and treatments for disease), would like to join your fight

against Meningitis. Using our disease profiles, we have worked with

several elite organizations to fight the cure for disease. If you could,

please list us as a resource or host our social book mark button, it would

be much appreciated. Together, let's give the meningitis world many more

iron men and women.
If you need more information please email me back with subject line as

your URL.

Anonymous said...

hi

its very nice story. i had the same problem, and stayed in hospital for 2 months.
my GB didnt realised till the pain got wors and wors and i couldnt berly stand up. and that was the time when he call 999 to get me to ER. This was when i was 12 in 1999.now im soo happy , but it got me long term side effect from my right hand. i wish this never happend to me.