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

17 May 2010

4 nurses, a trainer and a pump...

I didn't have much of a sleep last night but had to get up early for the PEG pump training..(yawn) which I had FOUR nurses turn up with the PEG pump trainer! As nurses need in the area need to know it works too just in case they ever have to use one as its changed its whole look and how it works, new cables etc.. Although the PEG pump food hasn't arrive yet so I still have to use my old one for now which is fine by me. The old PEG pump which I got in 2007 has a wire pole and is heavy to lift so you can't really carry it about if you need to.

The new PEG pump below

It is small and teeny and PUPRLE!!! :D It's also quite light weight too since its plastic but I'll see what it is like when the food is on it!!! It probably won't get carried about anyway! It tends to stay permanently in my room! since I get "fed" overnight. I did get a special kind of rucksack which you could put your feed pump in there and get "fed" as you walk about! But I doubt that will get used!!! After the PEG pump trainer showed me how to use it, we just got talking about usual hospital stuff such as why some hospitals don't communicate?? Honestly they are rubbish sometimes with communication such as letting us know when the feed is supposed to come or basic nurse things like a nurse can go to one area but she cant go to another part of the town?? Sometimes it's just ridiculous!

Anyway. after all that, in the afternoon I went for a nice hair cut since I got it cut 2 weeks ago and they made a right mess of it! But I'm happy with it now!

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