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 October 2015

peg trouble...

\last thursday i had to go to A n E again because my mum couldnt get the saline in  or out of my balloon in my peg so came to the conclusion that my balloon had burst again and needed to be changed. for some time ive been putting on weight naturally without the feeds and we think my meds are the reason that i am keeping it on and steady. for some time because of the weight the nurse has said i may need the next size of PEG as the one i had was getting tight which is why we think its  bursting often. so A n E put my normal PEG in and gave me some antibiotics as i had a bit of infection which was nasty taking bleagh! the doctor who put it back in said it was getting too tight and the PEG nurse was coming the following thursday so he gave me the antibiotics and and the following thursday the PEG nurse put a bigger size of PEG in and a bit loose which is ok just need to be careful when i put my meds through the PEG tube. all in all a good week!