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


18 January 2010

Operation go...?

I have been thinking a lot over the last few months (i do that a lot... i should stop overthinking!) about the eyelid operation. I have weighted up the pro's and cons with my family and I'm noticing my eyes a lot more because they are getting strained a lot these days, when I'm just reading or watching TV. I also have to close one eye to focus sometimes and balance out the double vision, it gets worse when I'm tired too. I have been going to bed earlier a lot more coz I just want to close my eyes and rest them.

am going up to Newcastle in March to see the eye doc as well as top doc in my condition Dr Turnbull. Another round of tests that I have each year, i can get a bit fed up of it at times but I know I'm doing a good thing, doing these tests as I am in a kind of medical survey thing which lets docs know how mitochondrial conditions progress. Since I have multiple DNA mitochondrial and it is rare in someone as young as me so they want to see how my deafness, my muscles, my eyes and feeding, basically everything and see how it is getting on each year. I think everything has stayed the same apart from my eyes.

So i think my next priority is my eyes and getting them sorted out before they get worse. It will be scary but I need to do it because its going to get done eventually. I'm sure it will help me in the long run. I have many Qs to ask the eye doc about this op!

I have also been re-pegged today! Thankfully it wasn't as bad as getting the tube one out and its even teeny! So thats me pegged for another 3 months! :)
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