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

3 August 2008

Even more weight...

Since Christmas I have put on another stone on and am now 8 stone! I see a dietician for my PEG who keeps an eye on my feed. I see her every couple of months and each time she has been pleased with my progress and has reduced my feed gradually over the months from 7 days a week to 6 and then 5 nights and so on. So far I’m on 3 feeds a week. I do worry that I might lose weight once my PEG has been removed but there's no way my PEG will be removed until I’ve spent 3 months without the feed to make sure I can maintain my weight. Hopefully I will be able to; I just have to keep eating little meals but often and lots of snacks!

What happened last year gave me a lot to think about, how lucky I am and have a great family who support me. I don’t really venture out of the house most nights and enjoy time with my family watching TV. I have a great set of friends who are always there and we can go for a meal or just a trip to the cinema. I hope maybe one day I’ll find a lovely boyfriend too!

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