Patient R’s Journey – Necrotizing Myositis

It all began when I was nineteen years old. I had become very tired and suffered from headaches almost every day. I was skipping university, waking up in the afternoon and staying in bed all day. One night I was sitting in the car and felt pain in my left leg, mainly between the crease behind my knee. I didn’t think much of it at the time. I thought I may have just pulled a muscle. I got home late and went straight to bed, only I couldn’t sleep. I was so cold; my body was shaking uncontrollably. My room was always cold, and because it was winter in June, I assumed it had just been a very cold night. Tossing, turning and shaking for hours in my bed, I finally decided to sleep in my mums bed because she had an electric blanket. I could feel that my body was hot but I still felt cold inside. I could not stop shaking, to the point where my mum woke up and asked what was wrong. Somehow, while having intense muscle spasms, I managed to fall asleep. I woke up the next morning feeling fine. As if nothing had happened. I didn’t feel cold, didn’t have a headache and I didn’t feel any pain in my leg.

I decided to go out with some friends because I felt really good but later that day, my left leg began to hurt again and my headache had returned. I went in my mums bed and rested there as soon as I got home. After a few hours, I got up to get Panadol from the kitchen. By this time, I felt very lightheaded. I went to the bathroom and next thing I knew; I had collapsed on the floor, my leg had failed on me, I felt so weak and I couldn’t get up. My knee was bent and it was too painful to even try to put it straight. A rash had formed on the side of my left leg just below my knee. All my family members were at work so I had to find the strength to lift myself up and hop back to my mum’s room. My temperature was high and I felt really hot. Once I got back to bed, I fell asleep. A few hours had past and I woke up on the bathroom floor, I realised I had fainted. I remember laying on the tiles for a couple of minutes trying to collect my thoughts and mustering up the courage to stand up again. Still not being able to put my leg straight, I hopped to the lounge room and laid down on the couch. Hours went by and it felt impossible to walk. My leg was stiff, red and slowly swelling up. Nobody was home and there was no way of getting to a doctor so I rang the ambulance. The lady on the phone rejected my request because she believed the situation wasn’t serious enough for an ambulance to come and get me.

When my sister came home, her and a friend helped me into the car and drove me to the local health clinic. When we arrived, I needed a wheel chair to get to the building. After observing my leg, checking my heart rate and temperature, the doctor demanded I immediately see a doctor at the hospital. When I arrived at the hospital, the nurses placed me in an emergency room right away. Several scans, tests and opinions later, a physiotherapist grabbed my leg, counted to three and snapped my leg back into a straight position and then put my leg into a splint. A doctor said it was just a severe cramp. After that it was suggested I wait till my heart rate goes down before I go home. Hours went past and I felt weaker by the minute. My heart rate was still high. In the meantime, I got myself up to walk to the bathroom and I fainted on the hospital floor. Nurses came to my aid and put me back on the bed, recorded my blood pressure and heart rate. It was even higher than before.

A different set of doctors came to see me this time and finally admitted me into hospital. The next night my rash had spread around my leg and up towards my thigh. I don’t remember much from this point on, except being moved from room to room, getting a lot of tests, ultrasounds and seeing different specialist doctors. Doctors had drawn arrows on my swollen leg with a marker as I prepared for my first surgery. The doctors informed my family and said if they found something alarming in my SECOND surgery, the worst case scenario would be to transfer me to another hospital.

That same night, after my second surgery, I was in an ambulance being transported to the other hospital. I was slipping in and out of consciousness. Being in hospital was a total blur. Doctors had said that I have a very serious case of myositis. It was extremely odd and raised a lot of eyebrows for the doctors because I was so healthy and had never been overseas. They said it may have been caused by a bug entering a blister or a small cut on my body. Three more surgeries later and more tests, I had become extremely ill. To top things off I also had pneumonia. Things were not looking good. My pneumonia was getting worse, I was on a heap of medicines, I had tubes coming out of my body and also had multiple blood transfusions. Nurses were told to wheel me up to the intensive care unit and just as they were about to, one student nurse pulled the sheets from my bed and saw my swollen leg with two drainage tubes coming out. She made a very loud noise as she collapsed to the ground, because of that, I woke up and regained consciousness. My family were relieved that I had finally woke up. I didn’t know what was going on though. A doctor had told my mum that my condition and the outcome of my next surgery was not looking positive at all. That night, I started to feel very weak again and slept majority of the time. My family were watching me disintegrate by the minute. Hours leading up to my last big surgery, that potentially could or could not save my life, my family members and friends, all devastated by the news, were wishing me well and saying their goodbyes. The final surgery was a risky one. If the surgeons could not remove my infected thigh muscle in time and I survived the surgery, amputation of my left leg was the final straw. I slowly opened my eyes while being wheeled away to the theatre room before my final surgery. I saw all of my family and friends standing in the hall all with broken hearts. I cried as I waved goodbye. This moment could be the last time I see all of their faces.

A few hours had past and my surgery was successful. The surgeons had removed my infected muscle. I woke up to see more than 40 staples in my leg along with a long scar running down from the top of my thigh to the back of my knee. I suffered from footdrop after my last surgery and was told the nerves in my foot would never recover 100% meaning I would never walk normally again. I left the hospital after a month and at first was in a wheelchair, then crutches. After months of extensive rehabilitation, my wounds on my leg had fully healed. I threw away my crutches and pushed myself to walk on my two feet. Then after that, I pushed myself to run, then ride a bike. My recovery was a difficult one, mentally and physically but I got through it all. My experience with myositis was not a pretty one and I almost lost my life because of it. I am thankful for the doctors who recognised the disease quickly and removed the infection in time. I wouldn’t change my journey for anything because it has taught me so much and I am much stronger from it.

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