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

16 September 2009

Can it get any worse...?

The peg situation isn't getting any better.. now it seems to be getting worse what with the skin around my peg :S
I found out when i was researching PEGS online yesterday that any long term PEGs should be changed every 8 months, so we are asking questions about why no one is keeping an eye on me and the PEG situation.
  • why am I not getting looked after properly by the NHS?
  • why am I not getting the proper aftercare after my PEG operation, etc check ups?
  • why did i not get my PEG changed after 8 months as rules say?
  • why do my NHS hospitals always wait til the worse senario before finaly doing something about it??

Now i have an infection with bad skin round my PEG which i have had for weeks because no one has been keeping an close eye on my PEG situation. which makes me so mad that I have to go through this pain in my PEG coz the NHS doesnt have the proper facilities to look after a bloody PEG?? My mum has been looking after it for me, if she can do it, why isn't there any one proffessional out there to do it to keep an eye on it if there maybe an infection on the way? I have a lot of Qs and no ones giving me answers?! its got me cheesed off that I should't have got this infection if someone was keeping an eye on my PEG and making sure everything is ok with it!

How rubbish is it that I've not really seen a PEG nurse in the 2 yrs when I first got my PEG and then nothing til i started getting my infections!

I am angry and i want answers!

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