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 August 2008

Dietician Disappointment...

As you can see my dietician appointment didn’t go well!! :0( Although my weight is still 8st and a half at the moment, it was disappointing that my dietician felt it’s not good enough for me to drop another day of the feed yet and the possibility of getting rid of my PEG altogether is slipping away. I felt so bad about that that I cried and made a fool out of myself. My dietician told me I still need to try and experiment with different foods and get a more varied diet before they would let me off the PEG. Of course I was proud that I’d kept the weight on and I look better but I feel it’s not my hard work, it’s the result of the PEG giving me all the vitamins that my body needs! I was disappointed that I couldn’t drop off another day off the feed from 3 days to 2 days.

But it’s hard to think that I can change my ways after I’ve spent most of my life eating the same foods that I have done & that I choose foods that I can chew and swallow more easily. I thought I would at least get my PEG taken out next year sometime but it seems that might never happen at the moment…

I’m just feeling a bit sorry for myself at the moment and that I can’t try harder than I already I am, I already have other things to deal with like my OCD and my other hospital stuff, that it’s just making my head explode! I just let it all out in front of the dietician and my mum. I felt a bit stupid about everything but they both reassured me that everything would be fine and I’ve done so well to get to this point. I suppose I am proud I have put the weight on and gone through the entire hospital journey but when will it get to the point where I’m going to be happy to be my relaxed self again and don’t have to have any anxiety attacks. I hope I’ll be ok and I’ll get myself back to tip top shape! Anyway that’s what I hope!! It may be hard to get through it all but I’ll do my best! After all, there are worse things that could happen. I feel very lucky to have my family around me at the moment.
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