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


12 February 2012

Gaining and gaining...

Well, the feeds to my PEG overnight every night are diong the trick i've ballooned from 8 stone to 10 stone and 2 pounds! Although the weight gain is great  and i m happy to be this weight and be healthy but I dont want to get any fatter!! My dad has started making pregnancy jokes...
The dietican is coming on Monday to assess my diet needs and maybe change from calories to energy feeds over night.  Its a different dietican to my usual one because my usual one is on sick and its hard to find a good dietican round these parts!

other than that my N5 is going great after 2 repleacments. The first one had smartsound on it and kept going quiet in loud enviroments and the 2nd one kept cutting out. Third time lucky! Im also have problems with the hook digging in the top of my ear. i wonder if my centre has a  plastic cover to go over the hook to be more comfortably. ill try some vasaline in the meantime.

i found this picture on a blog which is intresting.It shows the generation of CI's of which I am familliar with some of them. CI's have come along way since the box ones i used to use at junior school.

I have been on the look out for mito people and I struck lucky when someone added me to a mito group on facebook. We now meet and chat on skype every Thurs and saturdays to get together and chat about mito or anything we may want to talk about. Its good to know there's mito people out there even if its not the exact same as my mito conditon. But mito conditons affect people in different ways so its good to have support and also help others with advice. I even disovered that  someone knew Professor Turbull who I  see at Newcastle  because hes known for his research into mitochondrial research.  Its a samll world!
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