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


29 September 2009

Confusion...

WHY can't hospitals communicate?? Today I got upset over the fact I might have to have a camera down my throat to take the PEG out but the dietican has told me that wont happen. Why cant they just tell me the right thing thats gona go on when I have this PEG changed. Its giving me sleepless night over the worry of might what happen.
I want this PEG thing over with now really, and I can think about getting out and about again and going back to volunteering.
This lady over the phone told my mum I was going to have a cam down my throat and having the balloon *CUBBY* PEG and I stupidly looked it up on Google only to find a video of how its done which kinda shocked me that it can look that extreme! :0S
But thankfully when mum called the dietican up at Newcastle and she said I wont be having the camera down my throat and I can choose my own PEG.
How pathetic am i getting upset over it eh?
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