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


30 July 2008

The Muscle Biopsy




In January 2004, when I had an hospital appointment Mr Busby thought it was worth having a muscle biopsy to determine whether I had Myasthenia gravis because of the fact I was unable to put weight on, my deafness and droopy eyelids. I got quite worried about this because it sounded scary! I knew it had to be done though to find out what was wrong with me.
I went in for the usual routine pre- op things to check and meet the surgeon that would be doing my muscle biopsy. I wasn’t sure what to expect from a muscle biopsy but the surgeon told me all about it.

At the end of January, I was admitted to hospital for the muscle biopsy. My mum came with me for support. I wasn't looking forward to it and once I got into my hospital gown, I start to worry a lot. The surgeon came round to ask me which leg I would like the muscle biopsy on. I chose my left leg. He drew an arrow with purple pen on my leg to show where it would be. It looked funny having an arrow on my thigh!

When the bed came to take me, I burst into tears because it was so scary for me. My mum tried to calm me down and the surgeon told me if I didn’t calm down he would not be able to perform the muscle biopsy. I took a big breath and forced myself to calm down and get on the bed.
I got to theatre and they needed to give me a local anaesthetic in my thigh. Once the first one went in I screamed the hospital down because it was stinging so bad! I was wriggling about because of the pain so the surgeon took his chance and put a few locals in my leg and I nearly broke my mum's hand!! The combination of being upset and having the local was very traumatic! Once the local had begun to work and part of my thigh became numb, I settled down.
I felt cold because I was in a thin hospital gown and I began to shiver as they wheeled me in the theatre. The surgeon put a cover between my head and the rest of my body. A nurse began talking to me asking me questions about my life to distract me from what was happening.
I could feel tightness and some pulling but no pain which I was grateful for! It was all over in 20 minutes

I came back with a neat tight bandage around my thigh and I had no pain YET! I was told I could go home or stay the night at hospital. I opted to go home! The nurse told me if it got painful, I should take a painkiller or some Calpol. As I can't swallow tablets, I went for the Calpol! My dad came to pick me up from the hospital in the evening when he had finished work. My mum helped me get dressed and ready to go home. My dad stopped at the supermarket on the way home and mum bought me some Calpol.

I was relieved to get home and rest my leg on the sofa! It was painful going up the stairs to get to bed. My brother yet had to give up his bed for me and I was out like a light!
After 5 days I went back to the hospital to have the bandage taken off, when they took it off I was shocked to see 9 staples in my thigh. I was very relieved to get the bandage off as it was tight. The nurse gave it a clean and put a new dressing on it. I would be getting my staples out my local GP's surgery in a few days time!
I had the 9 staples taken out by a nifty gadget and it was painless! The nurse put another dressing on to let it heal. I now have a small scar on my left thigh! It’s quite cool and reminds me of what I went through and how brave I was!
The biopsy was send to Bradford and Newcastle hospital for testing.

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