I think the scariest thing about my experience with Meningococcal was my knowledge (probably lack of) of the disease. I had seen current affairs bulletins about children and teenagers coming to terms with losing arms and legs, fingers and toes and possibly even sight. And even those that had lost their fight for life.
So what was I supposed to think when my doctor raised his suspicions and said he’d ring ahead to Katoomba Hospital for immediate treatment?
I remember the day before I was diagnosed….. I had been at my first full time job for a little under two and a half weeks. It was a Tuesday and my colleague / school friend was making jokes about not standing too close to me in the lift because I was feeling sick. When I got home that night I considered going for a run, but I had a splitting headache and my energy had all but disappeared.
I’m generally not one to complain about not feeling well, so when I actually woke my Mum up at 2:30am Wednesday morning to tell her I really wasn’t feeling well, her warning bells sounded. The local doctor said it was just a case of the flu. Mum was unbearable – continually asking if I had a rash (she knew what she was looking for) ….. After a nap late that afternoon I noticed a light rash appearing on my arms and legs, but it wasn’t till Mum noticed the black spot behind my knee that we knew something was seriously wrong. Mum went into a panic, where I was completely calm (I think I was too incoherent to take it all in). I had never felt worse. I hadn’t eaten all day, I was beginning to feel sick and I could barely move because my joints were so stiff and my muscles so sore.
It all happened so quickly. One minute I’m lying down on the lounge. The next, Mum is being told to take me straight up to Emergency. And then there was the hospital experience.
It was five years ago now (to the date, actually), so things are a bit fuzzy – kind of dream-like. I remember things like sending Mum home to get me some clothes, the lumbar puncture which made the headache a hundred times worse, lying in emergency listening to a guy scream about his broken leg. My head pounding so hard that I couldn’t keep my eyes open and I was shaking. I was freezing. But I was more worried about my “boyfriend” at the time, than myself. I wanted Mum to call him – not to let him know I was in hospital, but I didn’t want him to get sick as well…… Mum didn’t know this; she just thought I wanted to see him.
I remember Dad arriving and asking what I was doing by scaring him so much. The doctors sitting me up to go to the bathroom, because I refused a catheter and not being able to see anything except a bright light. It was like looking into one of those fluorescent overhead lights…… Apparently the attending doctor told my parents I was suffering “hysterical blindness” and I should be sent home.
And that’s it.
The next four days have been re-counted by Mum, Dad, Michael, doctors and a few other special people. I remember little things. Like doctors attempting to hold me down, putting those attractive white stockings on my legs to stop blood clots, and a couple of faces in the window of intensive care. From what I have been told, the doctors at both Katoomba and Concord battled to keep me under control, with five doctors in Katoomba holding me down and then seven in Concord. In the end, they tied me down. I ended up being attached to a respirator in the event that I forgot to breathe.
I remember waking up on the Friday and my Dad asking if I knew where I was. I was positive that I was in Katoomba hospital. I was wrong; I had missed my one and only ride in an ambulance to Concord Hospital early Thursday morning. After that brief conversation, it wasn’t till Saturday that I really started to regain consciousness.
Another question – “Do you know what day it is?” I knew. It was Thursday. Again, I was wrong. It was Saturday. I lay there with tubes attached to me everywhere and feeling like E.T. with a heart rate monitor attached to my index finger. Kate was an ever-present figure – reading various cards to me and showing me pictures that my cousins had drawn. I had a funny taste in my mouth (which “Light and tangy” chips cured). It wasn’t long before I wanted to sit up and start removing my tubes. I noticed the naso-gastric tube that I thought was an oxygen tube attached to my nose. When it was half way out and I finally realised it went all the way down to my stomach, it was too late.
I couldn’t wait for a shower, to wash my hair and brush me teeth. I wanted to go home.
Not realising how hard it was to stand and walk after four days of complete bed rest, I was so sure of myself when the nurse asked me if I was O.K. to stand on my own. I wasn’t – my knees felt like jelly.
And so began my quick and (very) impatient road to recovery.
I was moved from Intensive Care to High Dependency. I had my long awaited shower and was even allowed to wash my hair. Worst part was, I had to get Mum to brush my teeth for me. Finally I was presentable to my family and friends.
My first meal in five days was breakfast, but because I had missed the menu selection, I ended up with a left over boiled egg and orange juice – not the best thing to start your appetite on. That was my only complaint about hospital food – the rest, I’d give a four star rating!
Finally sitting up in bed and reading Cosmo and Cleo with Kate and even playing with a “Where’s Wally” book was when I had my first encounter with Dr James Gench. Young, tall, blonde wavy hair and a Country Road wardrobe – what girl in their right mind would refuse to be treated!? James and his team, along with the other nurses and doctors at Concord hospital were fantastic.
I was only in High Dependency for one night before I was moved to a normal ward. I would have preferred to stay in High Dependency because I was moved to a repatriation ward. It wasn’t the most pleasant of places to spend the next few days, but I guess that was part of my motivation – I couldn’t wait to get out of there. There were a couple of lovely women there – the one beside me smelt of lavender and the one opposite always had roses.
I eventually had my central line removed (which later proved to be a mistake) and various canulas inserted in its place. It felt as though half the skin on my neck was removed in the process, so it actually looked like I had a huge hickey! I also had a view that you would only expect in a five star hotel. I was overlooking the Parramatta River and right next to a window where I could climb out onto the balcony. My headaches were still there and I was receiving needles every day for things like prevention of blood clots. I still had my IV of penicillin, which had to be taken out and changed location sometimes three times a day because my veins kept collapsing, but I was itching to go home.
I had a constant stream of visitors, but I also noticed that there were quite a few people that kept their distance from me. Some thought I was contagious and retained to a “bubble room” where you were only allowed in to see me if you were wearing a gown, gloves and facemask. Some doctors gave out incorrect information, saying that I couldn’t be seen because they would be at risk of catching the disease. People just didn’t have enough knowledge of the disease itself. Others were simply ignorant.
I had enough flowers to fill a florist, teddybears to cuddle up to at night and LOTS of chocolate, including a packet of Tim Tams that was devoured at two in the morning.
I was lucky enough to be transferred back up to Katoomba late Wednesday afternoon. I had a room of my own and a waterbed! It felt a bit strange walking back into the hospital – I remember it being in slow motion – it was probably me in slow motion, but I just felt so dazed. The next 72 hours went really slowly. I was barely sleeping because I had my blood pressure taken every four hours along with a dose of penicillin. My veins weren’t coping with the canulas, which meant that I was having them removed and then put in a different spot. I just wanted to go home. I couldn’t stand having any more needles (or the late night and daytime television). Unfortunately on the Thursday night I welcomed a roommate suffering from pneumonia, so from then till the Saturday morning, I barely slept.
My visitors were coming far and few between apart from Mum, Dad and Michael and Kate. It seemed as though once I was out of immediate danger, there was no need for them to visit me. I met a few of the doctors and nurses who had tended to me before I was transferred to Concord – they were more than a little surprised to see me.
Finally Saturday rolled around. Ten days admittance to hospital for the treatment of Meningococcal Meningitis Type (B). Although I can only recall six of the ten days I was in hospital, it was long enough. In all honesty, I think my experience with Meningococcal was harder on the people around me, than it was on me.
I have chosen to remember my experience as though I was lucky enough to beat the odds. I drove the attending nurses mad by asking when I could go home! It felt strange leaving the hospital – being out in such a huge open space. I actually felt car sick on my way home, and when we finally got there, everything looked different. Smaller. My room was full of flowers – you literally couldn’t walk in there.
It was recommended that I take another week off work to recouperate and regain my energy levels…… I was so bored. Mum drove me mad because she waited on me hand and foot. Towards the end of the week, I was “released” to go shopping with Kate and to a soccer game with Chris, although Mum and Dad barely wanted to let me out of their sight.
I experienced some very serious complications with Meningococcal – many of which were even new to the doctors. The most common symptoms include loss of appetite, nausea, intense headaches, aching limbs and a red rash. I encountered things like temporary loss of sight. Swelling of both the outer and inner membranes of my brain and bleeding of the brain, in which case, if the bleeding didn’t stop, a procedure would be performed where a hole would be drilled into the side of my head to stop the bleeding. That would involve shaving my head – when Mum told me this later, I told her that one bad haircut in a lifetime was enough, so there was no way anyone would be shaving my head!
Lucky for me, I was not aware of the more serious complications at the time. The doctors were learning as they treated me, so the questions that were asked by my parents often went unanswered. They were treating the unknown.
I look back on my experience and have not once questioned why it happened to me. Unlike many people who have contracted Meningococcal, I managed to walk away from ten days in hospital with no long-term side effects. Mum believes that I have my grandparents as my guardian angels, and after this experience I am inclined to agree with her.