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

26 May 2010

A wonky eye and pump...

Well, I have had a few ups and downs getting used to the new PEG pump! The first night on it went fairly smoothly and I thought I had got the hang of using the damn thing after the training! Still, we have our instruction page on what the certain words mean on the screen IE... PROG flashing means the pump is not programmed correctly to my feed settings! so it wont work unless it's programmed to my feed settings IE I take 1000 calories over night. A few nights ago on my 2nd try, this time on my own, because me and mum set it up the first time. I got to go to bed at 2.30am this night at the weekend (I blame chatting online! hehe ) so when I went for the pump to start it, it kept going on PROG... and of course I didn't have a clue what it meant at the time and I just wanted to go to bed! In the end I had to wake my poor mum up to show me how to work in AND without my CI on!!! haha.My poor mum!

Also, I had a panic very early one morning when I woke up the other day. I woke up, my right eye opened up straight away but my left one was lagging a bit, I literally had to open it up with my finger but the reason I panicked was because I thought my eyelid had finally decided to shut itself because it couldn't stay up any longer due to the weak muscles... but it was just extreme tiredness and the late nights getting to me. But it really made me consider doing this brow lift suspension sooner rather than later! Either way it's still a 6 week wait and I will still know how the person I am in contact with about it and how his went as his op is end of June. So I will see what happens but this op will be done THIS YEAR!!! eeek!
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