Encephalitis Cases
Amy
I was planning on getting married July 17, 2004 to the man, James, that I have been with for 8 years. We have a two-year-old daughter, Emma. During the month of June I felt nauseous all the time and had severe headaches. I kept leaving work early and just didn't’t feel “right.” I thought that it was just a bad flu, but the headaches were worrying me, so I saw my family doctor. My doctor thought that my problem was stress related, but told me to come back in if I kept feeling sick. I convinced myself that I was having an anxiety problem.
Two weeks later I decided to take some vacation and went to a cottage with my mom and my daughter. On July 7 I woke up in the middle of the night to throw up – all I remember was running to the bathroom and then my mom standing over me saying, “Amy, I just called the ambulance. You just had a seizure. Emma is okay..” I couldn't’t believe that I had a seizure. The ambulance took me to the hospital and my poor mom had to get on the phone to let my partner and my dad know. I remember throwing up all the way to the hospital but nothing after that.
My family has told me that when I got to the hospital my temperature was going higher and higher so they put me into intensive care. I kept having seizures for a couple of days. The hospital I was admitted to was quite small, so they moved me to Kingston where they would be better able to diagnose me. After MRI's and CTs they saw the encephalitis. After this I had a lumbar puncture and a brain biopsy. The doctors had to do surgery quickly because one of the scans showed that my brain had started bleeding. After all of this they diagnosed me with HSE. They still have no idea how I contracted it. I was not awake for any of this. One neurologist in Kingston, Dr. Alan C Jackson, was doing a drug study on HSE patients, and my dad and fiancee signed me up to enter the trial.
I woke up a couple of days after the surgery. It was very hard for my family to see me so sick. I’Ave never been a sickly person. It is strange to see how affected they were by that period of my illness because I don’t remember any of it. My sister was working in Oshawa and driving back and forth to Kingston for all of her time off. She likes to remind me that she spent many nights freezing with me in the NCCU while they tried to reduce my fever. I couldn't’t speak for a long time, but was lucky enough to be able to communicate with gestures. My mom kept Emma at her cottage so that my fiancee could spend his time with me at the hospital. He was driving back and forth from Ottawa to Kingston. Emma was very used to being with my mom and loved being at the cottage, so she adjusted pretty well. . Once James realized how serious it was, he cancelled the wedding. A lot of people had already booked trips to Ontario for the wedding, but ended up visiting me in the hospital. I don’t really remember them coming. I kept having strange hallucinations and had a hard time judging what was real. Apparently the only people I responded to were James, Emma, my Mom, sister and Grandpa
I was given really good care in the neurology ward in Kingston. After about a month I asked to be transferred to Ottawa so that I could be closer to my family. I didn't’t like them having to drive so far all the time to see me. While the staff in Ottawa was very nice, they put me in the Family ward of the hospital so I was not transferred to a neurologist there and they didn't’t seem to know what to do with me. I was very lucky to be part of the drug study because the doctor responsible for this study took charge of my care as much as he could. Because of the follow up tests required for the study we found out about secondary staphorious infections. Had I not been part of the study, I wouldn't’t have known about the infections until they got out of control.
A neuropsychologist saw me so that she could report to my insurance company. She recommended that I be admitted to a rehabilitation program in Ottawa. I was having trouble with executive functions (most of all initiation and concentration), my balance and strength. I was worried that I wouldn't’t be able to look after Emma safely with all of the attention problems. There were times that I just stared off into space and most of the time when people talked to me it took me a long time to answer, if at all. With the first staph. infection I was put on antibiotics for six weeks. The antibiotics made me quite sick and I literally threw up everything I ate for a month. During that month I lost 20 pounds, but the only people who seemed to notice were my family. My parents kept asking the staff to weigh me and to call a dietician, but nothing happened – I just got sicker and weaker. I ended up just laying in the hospital bed for 2 months. Physiotherapy came to see me twice but also didn't’t know what to do with me.
At the end of September I was sent to a Traumatic Brain Injury Program. As soon as I arrived I realized what had been missing in my care – an understanding about the problems I was having. The nurses and therapists knew exactly what was going on. They slowly got me eating again – my blood tests showed that I was malnourished. They spent a lot of time educating me about what was wrong and teaching me strategies to help myself. I saw a psychologist and did group, occupational, speech, and physio therapies. For anyone recovering from a brain injury, I really recommend doing rehabilitation. I didn't’t think I needed to do it, but once I got there I knew it was the right place for me.
In October, thanks to the drug study, I had another MRI and spinal tap and they discovered the second staph. infection so I was re-admitted to the hospital. My veins were not supporting the IV sites for antibiotics so they had to keep starting new sites. Unfortunately one nurse had a hard time starting an IV she just kept trying – for four hours solid. When I finally told her to stop she had poked me at least 20 times. The next day I had a PICC inserted by radiology in the one vein she had spared. I stayed on antibiotics for another six weeks and the infection seems to have gone away, but I now have an intense fear of needles that I didn't’t have before. I went back to the rehabilitation program and finished up just in time to come home for Christmas.
After reading other stories on this site, I realize just how lucky I am. I still have trouble with my attention span, but have learned strategies for dealing with it. I get headaches often, but nothing like I had when I first got sick. The only thing that continues to really affect me is fatigue. With a two year old I am exhausted by early afternoon. I think that this will get better as I get stronger. I have managed to put some weight back on, but the muscle is taking a long time.
So that's my story - thanks for having this site! There really isn't enough information about the real effects of encephalitis. Most of all, I am just very thankful to be at home and to have such great family and friends. I wouldn't have come through this without them. I can't believe the amount of support I received and how people were willing to drive for hours to come in and see me all the time. We have re-planned our wedding for this September and plan on having another baby after that. Emma needs a baby brother or sister to boss around! A special thanks to James, Mom, Dad, and my sister Erin!! If you want to contact me, my email is below. Update (January 20, 2006)
I am doing very, very well. Still having difficulty with executive functions, mainly initiation, planning , organization and concentration. My headaches were unbearable when I left the rehabilitation program, but seem to be getting a bit less frequent (down to about 3 days a week and less migraines). I realize that my recovery has been miraculous, but regardless, I get frustrated with not being back to the same Amy that I was before the HSE. I get tired so easily now. I used to be constantly on the go, but now I have about a 4 hour window, if that before I'm exhausted. Once I got home from rehab I realized that I have great difficulty with my emotions. I get angry very easily - at times I say things that I would never have said before, but I am working extremely hard on getting all of that under control. I get overwhelmed easily at home with my Emma. When there is a list of chores to do, there are days that I end up doing nothing. I am working on keeping a schedule and organizing myself. I don't have major issues with my memory, but I know that I can tell the same thing to James or others many times as if it was the first time I was telling it to them. That is frustrating. My neuropsychologist keeps reminding me that my injury is still fresh and that it takes time, but that is hard to accept. I have major trust issues with medical professionals now and still have a fear of needles. Unfortunately the hospital would rather support the nurse who caused this fear than the patient she took advantage of. James and I finally got married on September 3, 2005 and we are expecting our second child around July 10, 2006. Emma is 3 years old now and is excited about being a big sister. I have not been able to return to work yet. I am very thankful for the support that I have received from the rehab centre, my neurologist in Kingston and my family. Amy
Ottawa, Canada
Posted: March 7, 2004
