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

Myasthenia gravis?

As a result of having ear infections in my right ear that I lost my cochlear implant in, I still underwent operations on my right ear to see what the problem was as Mr Raine was puzzled by it.In November 2003 when I was 18 Mr Raine was undergoing a routine operation for last attempt to find out the problem and he put an ear wick to soak up the ear infection.It was not successful.

The day after the operation, I began to get aches and getting a bit stiff but I put it down to being in a hospital bed! Even a walk around the ward to stretch my legs didn’t help but I wasn't worried about it. I was discharged from hospital and over the next few days, I began to go downhill, it started with my legs being weak and I couldn’t move them very well. I had to swap rooms with my brother because I couldn’t find the strength to get up my bunk bed in my room. I found myself not being able to sleep because I was getting aches all over and the following days each part of me got weaker....I couldn’t eat because I found it hard to swallow food; I couldn’t even lift my head or even stand up without collapsing. My mum slept in the room with me because whenever I needed to go to the toilet, she literally had to lift me up and guide me there. I got very frustrated because I couldn’t do anything myself, I would be in the verge of tears every time I tried to do something as simple as lifting up my head.

A week later, I was still wide awake without a wink of sleep since I left hospital. I spent a Sunday morning watching the rugby world cup on TV with my mum and England had won the world cup. After watching that match, my mum decided enough was enough and called the GP for me the next morning. The GP agreed that I was very poorly and ordered an ambulance to take me back to hospital. I arrived at the hospital with mum a few hours later and they got me settled on a ward and waited for the doctor to come round to give me a check up. I just couldn’t be bothered dealing with anything because I was so weak and wanted to sleep but I couldn’t. My mum had to go home as visiting hours were over and I was distraught at this because I needed a familiar face with me. The first night at the hospital was awful, I was given a sleeping medicine and asked the nurses to make me comfortable because I couldn’t move myself but they walked off and left me to it! I felt so helpless and I just wanted my mum Although one nurse put the buzzer next to me to press if I wanted any help, one of them took it away from me and put it out of reach and I couldn’t even sit up to press it and I cried myself to sleep. My mum came the next morning and made a complaint about it.

The morning doctor came round and checked me out and agreed that I was extremely poorly and sent me to hospital ward after hospital ward but at one point I ended up on an old people’s ward where I stayed for a few days. My mum was disgusted with the hospital because I should have never been on that ward and made yet another complaint. On that particular ward, I was told by a friendly doctor Mr Busby that they needed to get some nutrition into my body and that they needed to put a tube down my nose into my stomach. I was attached to a feed to try and get me feeling a bit better as I hadn't eaten as much as a yougurt in a week and my weight had dropped from 7st to 5st.Mr Busby came back to see me a few days later and I was slightly better and told me I was still very sick and that I would be going to the intensive care unit. Mr Busby thought it may be
Myasthenia Gravis but wasn't sure until further tests.

For now the idea was to get me back on my feet and feeling better!
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