Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

1 August 2008

The near death experience....

In intensive care, I was wired up to a life support machine with a breathing apparatus down my throat. I’m only going by what my parents told me as it was them going through the experience rather than me as I was sedated most of the time.

The doctors told my parents I had caught
pneumonia and septicaemia. The doctors told my parents that some of the food I ate after the PEG operation had gone into my lungs which set off a chest infection in my lungs leading to pneumonia. My mum also told me that the nurses that told me to eat should have known of my condition and I was too weak to swallow and should have held off eating til I was stronger and fed me through the PEG after all that is what it was there for!! I was seriously ill and was given 24 hours to live at one point. My parents were distraught at this. As I lay in my hospital bed in Intensive care, my extended family was to come and see me in case of the worst scenario that I might not make it.

I made it through the night although doctors were still quite worried about me. I lay in my bed hooked to machines, whenever the doctors tried to see if I could breathe for myself instead of the breathing apparatus. The doctors had to wake me up but I kept trying to pull my wires off myself so they had to sedate me again.

My family was asked by the nurses to try playing music to me so they put my cochlear implant on my ear while I was sedated as they believe you can still hear music when you are under sedation.

After 4 weeks, I was finally able to come off the breathing apparatus but I was still very weak. The doctors were still worried about my breathing so they decided to perform a tracheostomy (A small slit in the throat to help me breathe). There was always a risk it might damage my vocal chords but done right it would be fine. My parents told me this by a note; I was far too weak to be bothered and agreed. With the tracheostomy in my windpipe, I was unable to speak, so the nurses gave me a mini whiteboard and a pen whenever I wanted to say something. My tracheostomy was connected to an oxygen machine which put air through to my lungs. I couldn’t really move with it on and I felt I had to keep my head straight. The oxygen tube came off a few times and I panicked about it thinking something bad might happen. The nurse reassured me that it was fine if it came off. It was hard to sleep with it on and looked forward to having it removed. Although after 5 weeks asleep, I wasn’t tired! I found myself talking to the night nurse for a few nights. He kept trying to get me to go to sleep because it was what I needed to get my body to recover more but I couldn’t seem to drop off. My mum often called when visiting times were over and see if I was ok.

After a few days, I knew what was going around me now. My family visited everyday with news, including the fact that my friends were very worried about me. They had set up a webpage for me with get well messages. I felt very overwhelmed but my friends couldn’t visit me because it was only family and 2 to a bed in the intensive care unit. Although they bent the rules a bit and allowed my best friend Kevin to visit me. I was pleased to see him but I was very tired and couldn’t talk for long.

I had been on some powerful drugs and it gave me some very vivid dreams which seemed so real. One dream was that I had been in the hospital helicopter and was in a different hospital entirely!! (My dad explained it was probably because I saw the helicopter pad at the hospital) Another was that a nurse had cut through my cochlear implant wire by accident. I was so distraught at the idea of losing my external part of the cochlear implant that my parents had to tell me that it wasn’t real! I found it hard to take in that it was just a dream! Although a real incident was that my cochlear implant ended up in the laundry because the nurses had forgotten about my cochlear implant and it fell off my ear while they were clearing my bed sheets. I was not very pleased to hear about that!!

I had my chest drain taken out, it wasn’t very pleasant but it was responsible for getting all that mucus out of my lungs! I still had to find the strength to cough though as that was the natural way of getting mucus out of your lungs. The doctors always kept telling me to keep coughing and get it all out. It was hard though because my chest felt tight and I couldn’t get enough breath in to cough. They also took my catheter out which was a relief because every time I moved, it was pretty uncomfortable and I was now able to go to the toilet properly again!

The whole time that I was in intensive care, my PEG was feeding me by a drip pump. I’m grateful I couldn’t feel the pain after the actual PEG operation. My parents learnt how to use the feed pump while they were waiting for me to come to from my sedation. I even learnt that my brother was very upset and was a rock for my parents.

After talking to my parents about what had been happening while I had been sedated, my dad told me he had won a large PG monkey off eBay because he knew how much I love the PGtips monkey. He told me he was safe and waiting for me when I went back home! My parents also told me they had changed my bedroom around at home, a new bed and drawers etc. I couldn’t wait to see it. They had changed my bedroom because when it came to the point of coming out of hospital, there was no way I’d be able to get up my bunk bed!

The change of bedroom was also to do with my drip feed because when I am on my feed, the wire I am on is not very long and has to reach my bed where I’ll be fed overnight. My parents also had to get a triangular pillow to keep me upright in bed because when you feeding you cannot totally put your head down totally on the bed as you may choke on the feed going in your stomach. I found my triangular pillow much more comfortable than a normal pillow because as I was very slim, my bones used to ache when lying on a mattress as I didn’t have a lot of muscle to cushion it. I could rest my head more easily and be more comfortable to sleep without my arm hurting me.

My tracheostomy was getting better and they could now let me speak when they took a piece off that was connected to it. My voice was very hoarse and I tried to speak with it but it was a very weird feeling like you have a box hanging on your throat. I sort of sounded like a Dalek from Dr who!

Eventually, I had the tracheostomy taken out and I was left with a hole in my throat, the doctors told me that the hole would eventually get smaller and seal up. For now, I had a dressing on it. It started at the size of a 1p penny. I could feel the gaping hole in my throat but with the sealed dressing on it, the hole was completely fine and would seal up and leave a tiny scar.

My tracheostomy scar

I was bored a lot of the time I was awake so the nurses gave me a TV to watch and I watched Big brother and watched the contestants going in. I had good chats about big brother with the nurses who I liked and who I wanted to go etc. The intensive care nurses were really friendly and took good care of me. I got to know them well the 6 weeks I was in intensive care.

When it came time to start getting out of my bed to walk about, I was very dizzy as id just been laid up for 5 weeks. I had a physiotherapist help me get out of bed, at first it was just walking a few steps to a seat for the nurses to change my bed covers. I didn’t like this because once I was sat up, my chest felt tight and I felt like a heavy weight that only those few steps really took it out of me. As time went on, I began to use a crutch with wheels on it and I would hold on to it and began walking even further. When I got bored, I sometimes felt well enough to go to the hospital shop, although in a wheel chair. I also ventured to the cochlear implant unit and said hello because they had been worried about me!
June and 6 weeks of being in intensive care, I was well enough to be moved to a normal ward. I was very happy about this because it meant i was getting better and soon i could go home!
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