ENCEPHALITIS CASES

Encephalitis Cases

Lil

My name is Lily (most people call me Lil). I am 50 years old and contracted Herpes Simplex Encephalitis in October 2002. I am married to Mike (24 years) and have two teenage sons (ages 19 and 17).

Here is what I've been told by my family, I do not remember any of it.

I went to work on Tuesday, 29 October. I was told I went home early that after noon because I wasn't feeling well. I drove myself. I haven't a clue of leaving, let along driving, getting home or going to bed. They tell me I received a phone call from my best friend. No matter how tired I am or how bad a headache got I always took her phone call, but not that night.

Wednesday morning when my husband got home from work at 7:30 am (because he works nights) I was still "sleeping". By noon I was moaning, groaning and yelling. Mike called 911. I'm told I fought with the paramedics, was yelling, taking off my oxygen, and trying to take off my clothes. I flung my arms around so hard that my rings came off. I was having seizures, turning blue and vomiting.

After getting to the hospital, they were told I was in a coma and had been since Tuesday. Of course they did a spinal tap and tried an MRI. I kept moving around so much that a 30 minute MRI took over 3 hours. The nurse told me that all the images kept coming out blurry. Until one, and the doctor said 'THERE IT IS' and then they knew. And because I had the signs of a cold sore they believed it was Herpes Encephalitis. I don't know what kind of test they did to confirm it but they did. I had no idea that a cold sore could be so dangerous!!! The nurse also said that something unusual happened, I had a seizure and that is what brought me out of the coma. I guess that is very strange. That was at 3:00 AM on Thursday.

I remember nothing of Tuesday, Wednesday and very little on Thursday.

My first memory is of a young man from our church visiting me. Although my husband was there I do not remember him until Saturday, when I told him to go help his brother who was stuck on a mountain with my two sons. They were hunting with their Uncle, who is from out of town and his truck as well as camper was stuck and one of those had a broken axle. Mike didn't want to go, but I told him I was in the best of care. Some people don't agree that I should have done this, but my kids were there and I was more concerned with them and getting them home safely then having my husband hold my hand.

Any how, they started me on a Acyclovir right away and some other meds because, my kidneys shut down, my heart was not right (not sure what was wrong with it but they told me and I just don't remember), I had some tremors in my hands, and my feet swelled from a size 8 1/2 to a size 10 shoe.

I have been told by the doctors and nurses that I am very lucky, and I truly believe that. Most people (and I read this too in others stories) are in comas for weeks, months or years. They said when I was asked my name, address and phone number on Thursday morning I remembered it, but on Friday I didn't. I got it back on Saturday and wrote it down so I wouldn't forget it again. That is when they knew I would be OK, at least that's what they hope for. It took me until a while to be able to write (well print my name). That too has improved, but not like it used to be.

In this short period of time, I have noticed that I have forgotten many things. Because someone will say something and I will look at him or her and say I haven't a clue as to what you are talking about. Some other things are: For example how to cook a turkey, make a pie crust, spices for the stuffing. This may seem silly to some, but Thanksgiving was only yesterday. I forgot my nephew's wife's name. People tell me something and then a few minutes later I will ask them about it and they say I just told you. It is very aggravating for both of us. I know my husband and I got married in Alaska, but I hardly remember anything about Alaska.

So far, short term and long term memories are affected, headaches (but not all of them are extreme), dizziness, hand tremors and very tired around 1 or 2 in the afternoon. I have been practicing typing and chatting with my sisters who have been wonderful, especially when I know I've spelled something wrong, they will correct it for me. (And thank goodness for spell check!! :-) ) My job is visual information specialist, making posters, flyers, advertisements, but I seem to have lost that. I've tried here at home to make some up and it is blank. Or they look like a school girl made them. It seems like the artistic side of me is gone. I got to go to work for a whole 4 hours one day and then the doctor said no, not until I see the neurologist. But while I was there, I looked at some programs I use and didn't have a clue about them. So I have to learn them all over again or at least try to.

I'm not sure about my personality yet, but I do know I don't "feel" quite the same... I guess time will tell.

In almost every story I've read, they have said patience and time are what we need. One day at a time. I'm trying, but it is hard.

I will see the neurologist on the 9th of December 2002. I really hope he knows about this disease and can give me more light. I will try to let you know what he says.

One last note, as soon as my husband called the ambulance he also called one of my sisters and put me on a prayer chain. She called and e-mailed several of her friends, so I was on prayer chains/lines around the world. I truly believe that God brought me back. He just isn't finished with me yet.

If anyone has comments, ideas, suggestions, I will be glad to receive e-mails. God Bless you all.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Lil
Colorado, U.S.A.

Posted: December 08, 2002

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