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

13 December 2017

newcastle tests results

we had been out of hospital for 3 weeks now and the soft diet was driving me crazy! i was desperate for a cup of tea but i could only have fluids and fibre energy drinks through my fibre drinks and fluids through my PEG to keep my weight stable.

i went for an xray first at the main hospital and met a doctor about my eyes who said brow suspensions wouldnt work now on my eyel lids which i already knew deep down. i will just have to get used to looking dopey!

The next day we went to cresta clinic and saw catherine feeny who did my obs and had a chat about how i was getting on then we saw professor turnbull who told the results of the xray i had done. My left side was totally clear but my right side still had some white but he said physiotherapy will help with that but he doesnt want me to exert myself becuase i will only become ill again.  We talked about the possibility of me having CPAP at night time but he said im not at that stage yet which is good news. but he said i may need it in the future which i considered anyway and that carry on with the soft diet (BAH!) but im happy with how things are going. im continuing the physiotherapy at home and the stadium gym.

i can just look forward to christmas now!