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


16 September 2008

A Little Update...

I start my volunteering tomorrow afternoon at my old junior school and got up early today so I can get a good night’s sleep tonight so I'm refreshed for it! When I was putting my cochlear on this morning my brother came in to my room and he was talking his normal tone of voice but my CI was up REALLY loud! Haha I must have adjusted my volume when I was putting it in the protective box last night before bed (I always do that before I go to bed so it gets rid of any moisture & keeps it safe) then when I adjusted my volume back to my normal between 4 and 5, my brother started whispering as to think I put it down too low!! A right joker sometimes my brother!! haha. Once last year, I panicked that my Cochlear Implant wasn’t working one morning- I switched it on and off several times and tried it again and checked I had batteries in (which I did) but I must have left the CI processor switched on all night and the batteries ran out!! DOH I got myself into a right state too because I was meant to go out with friends that day!!! Once of my bad points of having my CI is I worry about losing it after I lost the last one i had but I have peace of mind that my CI doctor is keeping a close eye on it after what happened and at least I and my family know how I lost it in a way (my condition being a factor to the long time I had the ear infection)

A bad update is I’ve been a bit sore on my PEG site on my tummy and I could hardly move without it hurting and it’s like a sharp feeling as if u have a piece of glass in there so it’s not been nice feeling like that! It’s all better now since my mum put some cream and a bandage between my stomach and the little piece that’s stops it going inside my stomach! MUCH relief!

1 comment:

Charlotte said...

Good luck tomorrow. You'll be fine.

euch, about your peg thing, I hope it gets better for you.

C x