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

27 August 2009

Button or no button...?

My mum was takling to Newacastle hospital this morning, she was tellling her about my tube PEG, the nurse told my mum, in shock that do i really have the tube PEG at the age of 24?? and that I shouldn't have to put up with having a tube one at my age. So they were talking about the possiblity of giving me a"button" PEG which is one without a tube and less horrible to look at really... which is always a blessing.
The only thing I'm NOT looking forward to is having the local anesthetic to "yank" it out! and put the new one in...
I know it's only in the disccusion mode at the moment though but I was hoping I wouldn't have to have the PEG in long but as time goes on and it seems it is getting more possible it may be a permenant fixture of me for the time being. Oh well!
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