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

17 September 2009


We are getting somewhere with the peg situation! Mum has been talking endlessly to Newcastle nurses since Huddersfield or Halifiax dont do the button peg procedure (dont ask why) I was going to have it done at Bradford since it was closer than Newcastle but when my mum talked to the nurse at Bradford, and the nurse there was like "why does she want the button peg? and talking about the fact that PEGS can stay in for 9 yrs!" which is untrue. I want the button peg because im 24 years old, why should i have to live with a tube hanging out my stomach when I don't have to?
We thought she didnt have a clue what she was talking about so we decided to go to Newcastle where they know me and my condtiition well and I have it done in 4 weeks as a day case. I feel reaasured at Newcastle that they look after me well, although i wish i could say the same for bradford. No one seems to communicate there and im passed around like a bloody plate of food! it's not a nice feeling. Im grateful for bradford hospital for giving me the cochlear implant but every other time ive been in there it's been a disaster such as my landing in intensive care for 5 weeks because a nurse told me I could eat food when I shouldn't have.
At least I dont have long to wait long now and I can get my PEG and the infection sortedout. The nurse at Newcastle told us that the infection is due to having the PEG tube in too long as the inside piece under the skin of my stomach can crumble.
I honestly don;t want a tube falling out of me!!! I'm just glad im finally getting the infection and the PEG sorted out! :0) and be pain free! I don't know what date i'll be having the procedure yet but at least it will only be a day case and I can sleep in my own bed! I'm not looking forward to the local though :0S
Watch this space!
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