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


1 July 2015

eek button burst!...

on sunday as usually do have my meds one by mouth and one through PEG line but today in horror my button came out with the line and i was in a bit of a panic coz it had never happened before! but mum sat me down and put the emergency catheter in and tried to get on the phone to the PEG nurse. of course it was a sunday so mum couldnt reach her so we were told to go to A+E  this was 9pm at night Also being a sunday my dad had a few drinks of wine so couldnt drive me so my brother had to drive me and mum to A+E where we got seen straight away. 
There was a nice male nurse on duty to pop the PEG back in and reassure mum that putting the catheter in straight away was the right thing to do so 15 mins later we left A+E and headed for home a bit sore but glad it could be sorted out quickly! Mum phone the nurse the following monday to get a new date for re- pegging. 
Thank god for cool headed mums eh??
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