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

24 February 2011

3 different medications, 2 visits to the doc and lots of coughs...

This has been going on far too long now! i feel im maybe starting to get somewehre now even though im exhuasted and tired from sleepless nights and lots and lots of coughing!
called my GP several times who has prescribed me 3 different medicenes and im now on the 3rd see if it helps.
ont he 2nd medicene prescribed we were told we could put it through my PEG once it has dissolved but it blocked it. we had to call out our district nurse who had never seen a button PEG like i have before.   she had to call my hospital in newcastle before attempting to change the button herself because my PEG nurse was busy elsewhere. Newcastle talked her through it and she almost struggled to get it in but it finally popped in! i was like thank bloody hell for that otherwise id have to stick with a catheter tube in there til the PEG nurse came.  Now the new peg button was in, she checked to see if it was unblocked and i could continue my peg feed since ive been ill and have needed it more than usual. I feel very tired and sinus are affected by sore eyes.
hopefully the 3rd time lucky medicene will do the trick! watch this space!

9 February 2011


I had the physiotherapist over yesterday for a reivew on how they can help me. We had a long chat about my muscles and how/where they ache/stick and the history of my mitochondrial condition.
She gave me some 3 excercises to try once a day to build up my strength in my muscles. She said it wasnt about being flexible or fast but to try and strength up the tummy core parts so it can help me to use my back and the bottom half of my body more because the physio told me im using more of my upperbody to get up and down etc or do things. she was also concerned about the way i walk because of my feet when they are relaxed sort of flop forward rather than stay upright so she hopes the exercises will help that.
other thatn that i found out im suffering from a viral infection and the doc doesnt have a time stamp on how long it will be before i get better. he gave me medicene for the mucus thats sticking in my throat. i also emailed Newcastle to let them know and they replied back saying the GP told me all the right thingjs and i just have to wait it out and continue my feeds over night.

5 February 2011

Touch phones,...

My phone is falling apart! oh nooo. its been a while since i lookied for phones since ive had my trusty phone for about 2 and half years and now the keypad is falling off!! too much texting?
Anyway, i looked at the latest phones and most of them seem to be touch screen kinda phones and ive never really been a fan of them! i want ny phone to look like a phone! I ususally went for sony erricson for the way it sounded clear when i take a call or cal someone.But now even sony erricsons seem to be going into touch screens too1 I worry aboutt touch screen side of things because of my cochlear implant.  ive never touched touch screens and then touched my cochlear implant but if they are anything like tv screens i worry they will scramble my MAP so ive sent an email to the cochlear implant centre to see if they are safe to use with cochlear implants.  if they are ok, i may consider one and enlist the help of my brother to help me look for one! anyway apart from that the left eye still feels strange and i keep closing it to foc us but ill ask about that at my next hospital review!