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


11 October 2017

To dye for...

Having been home a week nil by mouth apart from formula drinks going through my PEG i was going crazy i wanted something to eat!! i hadn't  eaten for 3 weeks!

i was sooo glad that the time finally came for my appointment for the dye to down my throat to show that food was going down the right hole 

We had to go to Halifax as that was the only hospital that did it near us and they only do it once a week. Don't ask me why!

in the appointment they gave me a apron to put on just in case it got messy and i sat next to a x ray machine   (dont worry i took my cochlear implant processor off!)  they first fed me the dye on its own to check i could swallow liquids which went fine. They then  fed  they dye with some yogurt and then the dye with yogurt and bit of biscuit in. Although they were happy with them all going down the right hole ,they were worried that food sometimes "sat"  in my throat called "pooling"  and they were worried because sometimes it sits there too long that it could go down the wrong hole. They said as long as i had a drink every time i ate it SHOULD be fine but i have  to be careful not rush. 

They were happy for me to start having soft foods such as yogurts and scrambled eggs etc but not a big meal like fish and chips. they dont want me to go crazy eating everything! 

The motto is slow and steady wins the race! 

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