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My name is Penny, the wife of Ian who was diagnosed with Herpes Simplex Encephalitis in September 2001. I am writing this because at the time, I was the loved one reading other's stories on this site in order to get a better understanding of what was happening to my husband. Also Ian has no recollection of the first week of the illness so cannot with any authority write about it. I am writing now as it is the anniversary of his illness and I would like to think I could give hope to others when all looks grim. Ian is fully recovered with no side effects. He beat the odds and for that I am thankful. However the harrowing time we went through is still fresh in my mind and he is still fearful of a recurrence however unlikely.
We live in Sydney, Australia, but Ian is from New York It was just a little vomiting
in the night and he said he was going to go home from work the
next day because he was feeling a little feverish. However,
the next 24 hours were like a nightmare.
Ian phoned me from his car on the way home from work. He had the sense to page
me at the office as I wasn't answering my phone. He told me
he was feeling dizzy and that his left side had gone numb. His
voice was slurring and I thought he was having a seizure of
some sort and told him to pull over immediately and that I was
on my way. He had pulled into a gas station and by the time
I got there had deteriorated even further. He was speaking complete
gibberish. Whilst he could apparently understand me, I couldn't
understand anything he was saying at all. He was disoriented
and wandering aimlessly around the gas station. I managed to
herd him into my car and started immediately for the hospital.
He started to panic and started reaching all over the car. He
was looking for car keys and trying to insert them into the
dashboard, stamping on the floor looking for the brakes. I tried
to calm him down, but he was out of control. I managed to pull
over and just asked him to trust me and he calmed enough for
the rest of the journey.
Upon arriving at the hospital he had gathered his senses a bit, we were able to talk but he was terribly confused. He was taken into Emergency immediately and it was here that they tried to decipher what was causing these symptoms. His confusion got worse, even the simple action of taking of his clothes sent him into a complete panic he just didn't understand what was happening. Eventually he was sedated simply so treatment could begin. However the confusion would resume as the sedation wore off and by the end of the day he was sedated so deeply that he was on a respirator. Effectively he was put into a coma and transferred into Intensive Care where he remained for a week.
Once the diagnosis of HSV had been determined I was advised on the seriousness
of the situation. The doctor explained that the odds were much
better for those under 32, you can imagine the horror I was
feeling when I explained that Ian was actually 34! There was
only 30% chance he would recover and then the chances were that
he would be altered in some fashion. I was advised to bring
his family out from the US. His eldest brother flew out from
London with his wife and I spent the next week at his bedside
whilst my own family helped me care for our two young children
who were 3 and 1 at the time.
Ian was completely wired up with machines blipping and beeping all around. When
I think of the amount of drugs he was given I shudder. He was
eventually given a central line in his neck to be able to handle
all the various infusions he needed. He just stayed like that
for days, all we could do was wait. About 4 days into the coma
they tried to revive him to see how he was progressing. He immediately
freaked out. It took 7 of us to hold him down. He was trying
to rip the respirator out and was in total distress. He was
immediately sedated again and remained that way for a few more
days when a more gradual revival was made.
Then he was awake and not only was he awake, but he wasn't brain damaged in any
way. He had defied the odds. His quick descent into the illness
was countered by an equally quick recovery. He spent another
week or so in hospital as treatment was completed and then came
home for a period of R&R. He was back at part time work one
month after his release from hospital and full time a month
or so later.
He had no recollection from the moment he called me in the car to the moment he woke up. He was completely blown away by the fact
that his family was there and it was a few days before I think it really dawned on him what exactly had happened. He still worries when
he gets a headache. He knows the chances that it will come back are very remote, but it brings the memories of his recovery back. He
cannot remember the first week at all, thankfully. All he is aware of is how he felt afterwards. He was ill, weak, tired and the headaches
were horrendous. In time these have all passed and he is back to his old self. It's hard to think this all happened a year ago. So,
there is light at the end of the tunnel, I thank my lucky stars every day.
Penny
Sydney, Australia
Posted: September 16, 2002
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