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

28 August 2009


I'm still exhausted and tired from my stint is hospital when I left last week, this morning I went for a blood test to send off to see if my liver count is back up to normal again. I hope it is! I don't want another medical problem! I will find out in a few days when it arrives at the docs! I'm getting quite used to blood tests! That's not normal! :P

The Abbot nurse also came about my PEG this morning too, she gave us more information about the "button" PEG and it would be better to have that instead of the tube one. It would involve a day stay in hospital to take the tube one out and put a temporary tube in. A week later, the nurse will exchange the temporary tube for a button PEG. I may not need to go to Newcastle for it so that's something. They will give me something that will make me go all sleepy and woozy when they take out the PEG because you don't wanna be awake if you tug on that. It can be uncomfortable!

I got upset while the nurses and mum were talking over me, because I never expected to have the PEG in this long and it's just a bit disappointing really. It was only going to be a temporary thing and now it's seems like it's becoming a permanent fixture of me right now. But at least having a button PEG will be smaller and more discreet than the tube one I have. I think the tears were also because I'm still so tired from leaving hospital too. I still don't feel 100% back to me yet.

A PEG is not really something you want at the age of 24, but I guess I'll have to put up with it a bit longer...
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