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

28 February 2014

rare disease day

Today is rare disease day and its good to get awareness out for mitochondrial disease which is rare and can cause problems for my muscles and my energy levels it also affects the organs, every bit of your body!
please pass on this blog to get more awareness out there for mito sufferers

24 February 2014

PEG or not to PEG... that is the Q

Now ive been off my feed for almost a few months now, my mind started wondering if I cope with out my PEG button? 
Niggling feelings of normality without a PEG in and the voice of reality AKA mum pips in to say what would I do if I had a mito crash and cant swallow food? or medicine for that matter?

The PEG nurse when she last changed the button told mum if it ever did come out accidently they would probably leave it out since im a healthy weight and have coped without feeds for a few months and my depression medicine that goes through my PEG is being reduced to the point I don't need it anymore. although I still do need depression meds by mouth (pills t hat wont go through PEG)

Its certainly something to talk about when we next go to Newcastle in April, if the nutrition doc
feels I could do without it.
I do have some doubts thanks to mum when it comes to mito crashes I don't want to lose the weight Ive spent the last 8 years putting it on and although its stable at 10 stone it is still up and down and I still don't eat enough to keep me going.  (I just eat when im hungry)

If I did have it out  and I happened to lose weight also when I had my first tube PEG put in, it almost killed me and my mum has always said she wouldn't want to go through that again!  and I wouldn't want to wish that on anyone.
Watch this space...