Welcome To My Blog...
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.
29 September 2009
28 September 2009
24 September 2009
18 September 2009
17 September 2009
16 September 2009
- 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!
14 September 2009
8 September 2009
2 September 2009
On my medical note, my peg is looking better after having some dressings and special cream on my peg site. It could look even better after some more dressings i guess, and faltten that wart type ball that was growing out of my PEG site. I spent the night being woken up by my parents and my brother because the feed pump kept beeping! I had enough of it by 3am and told them to just turn it off! Only to be woken up early by mum in the morning because the nurse was due to come so I got nooooooooo sleep whatsoever!
I am still waiting for a date for my "button" peg procedure which might be a couple of weeks. Apart from that just lots of flopping about!