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

22 February 2010

Button PEG flaw...

I have found a flaw in the button PEG which I got back in November. Apart from that tiny flaw, the button PEG is brilliant!

I find that the extension tube that clicks into my PEG, when you turn it all the way round clockwise, there's nothing to stop it from going back anti-clockwise so if you are fiddling in bed, it finds its way back anti- clockwise and can come out. It would help if there was a stopper to keep it there while you sleep! It has come out once or twice and I've woke up in a pool of stinky, sticky feed liquid in my bed. Some nights, I can be fiddling with the PEG tube to make sure it's still in and it's still all the way round clockwise! I'm having a few sleepless nights when I'm on the feeds because of that. BUT apart from that the PEG is all great and I haven't had an infection so far!
Plus it's a little dinky think on my tummy and I forget i've got it sometimes! hehe
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