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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 and I think it no coincidence that Ian's illness occurred 10 days after the Sept 11 disaster. Ian was, like all Americans, completely shaken by this event and it was no surprise to me when he started to show signs of catching a bug of some sort. After all, his immune system must have been weakened by the stress and shock. 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. It
seemed like he had blacked out at some point, because he had spilled a bottle of water in his lap and dropped a lit cigarette burning
a hole in the car seat. 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. He finally
grabed the steering wheel. 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. He could even need permanent care. I was in complete shock. 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 both painkillers, sedatives and antiviral
medication 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. I was on autopilot myself, my days were a series of mad moments as
I tried to manage my children, and spending as much time as I could at Ian's bedside and simply just trying to function. 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. I was exhausted both mentally
and physically and I'm sure other caregivers can testify to how surrealistic everyday life felt after living and breathing this experience.
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.
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Penny
Sydney, Australia
Posted: September 16, 2002 |
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