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


14 September 2009

Cochlear Implant meet up...

After a crap week of downness due to the death of Grandma and my bad PEG, I could have done with some cheering up and thats what I got when the boyfriend came up for the weekend :) We went to the Cochlear implant meet up and a lovely BBQ at one of my family friend's house!

We went to the cochlear implant meet up of families at a Huddersfield pub. Although, only 2 other families made it to the meet apart from myself and the family that organized the meet up but we had a good after noon of sharing views and opinions of cochlear implants. We had hoped more would come but with issues with trains and short space of time to organize it were factors but we got to meet 3 lovely families out of it!

Hopefully there will be more at the next one that we plan to do next year which give us more time to plan it and more time for people to organize to get there if they can.

The PEG has settled down at bit, I'm still using these silver patches on it which makes it sore but apart from that, it's better than it was! I am also hoping the "button" PEG procedure will be soon too. I'm still waiting for a date on that.

I've also been doing some boing exercise on the Wii yet again to try and built some muscle on me, it might be a lost cause though what with having a muscle condition...! But it's worth a try!

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