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 December 2009

Silly hospital confusions...

At least some good news for Christmas, I don't have to see the nurse every Monday til January because my mum knows how to unfill and fill my balloon in the PEG. My mum has seen the nurses do it themselves plenty of times even though they don't have a clue about this type of button PEG. They actually have to look through instructions on how to do it. I don't know why my mum can't do it all the time and have a check up of the nurse on the phone?

Then in the mail today. an appointment for me to have an eye check up in Newcastle in January when I'm due to go in March?? When the agreement was to go up to Newcastle in March to have my check up on my condition, my eyes AND my PEG. yes it's always one long day there... mostly sitting around waiting to actually see them then it's loads of tests (which I'm quite used to that it's become a drag...) I assume they wanted to discuss the eye lid procedure. (which I'm still freaking out about) but I will listen what the eye docs gotta say but in MARCH! Even though I'm freaking out about it, I know I have to do something about my eyes. Even if I don't like the fact it's surgery near my eyes, but i'm hoping it will be the LAST procedure I need doing because of the condition. Then I can relax for the rest of my life.... maybe... I hope...

Either way I'm looking forward to christmas and forgetting about my medical worries have just have funnn!

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