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

30 October 2008

Ear Pain and Random thoughts...

My implanted ear is playing up! I have a sore little ball in my ear lobe. I dont know why I get it but its sore and annoys me. It makes me paranoid in a way because the slightest little pain I get with my ear, I assume it's the start of an ear infection and I'm terrified i'll lose the cochlear implant that I have treasured for many years and has become a part of me. My parents reassure me that now I'm getting nutrients from the liquid feed in to my PEG and it will protect as much as it can do from ear infections. It was around November in 2000 that I lost my 1st cochlear implant in my right ear and although it wasnt a big deal at the time, it is now because I worry i'll lose this one too and I wont be able to have another one implanted should it ever happen. I TOUCH WOOD & CROSS MY FINGERS AND TOES that it never will lose my cochlear implant!!
Another thing I find myself thinking about is the quality of the implant that is embedded in my skull as I grow up, time moves on and technology gets better etc The external part of the cochlear implant equipment moves on too so in the future, maybe my internal implant wont be compatible or updated enough for the new external pieces. Whcih would mean I may need to have another operation to get a new internal implant in the future to keep up with the technology? I always think iF IT EVER HAPPENS, I will deal with it at the time and make my choice.
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