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

26 May 2010

A wonky eye and pump...

Well, I have had a few ups and downs getting used to the new PEG pump! The first night on it went fairly smoothly and I thought I had got the hang of using the damn thing after the training! Still, we have our instruction page on what the certain words mean on the screen IE... PROG flashing means the pump is not programmed correctly to my feed settings! so it wont work unless it's programmed to my feed settings IE I take 1000 calories over night. A few nights ago on my 2nd try, this time on my own, because me and mum set it up the first time. I got to go to bed at 2.30am this night at the weekend (I blame chatting online! hehe ) so when I went for the pump to start it, it kept going on PROG... and of course I didn't have a clue what it meant at the time and I just wanted to go to bed! In the end I had to wake my poor mum up to show me how to work in AND without my CI on!!! haha.My poor mum!

Also, I had a panic very early one morning when I woke up the other day. I woke up, my right eye opened up straight away but my left one was lagging a bit, I literally had to open it up with my finger but the reason I panicked was because I thought my eyelid had finally decided to shut itself because it couldn't stay up any longer due to the weak muscles... but it was just extreme tiredness and the late nights getting to me. But it really made me consider doing this brow lift suspension sooner rather than later! Either way it's still a 6 week wait and I will still know how the person I am in contact with about it and how his went as his op is end of June. So I will see what happens but this op will be done THIS YEAR!!! eeek!

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!

10 May 2010

New purple pump...!

Next week, I will be getting a snazzy new purple pump for my PEG! I've been checking it out online and it looks really cool! It looks smaller and I will be have better feed packs as at the moment we get BOTTLES of feed and on the new pump, they have these tinfoil bags now that u can just throw in the bin. Next monday, me and my mum will be trained how to use the pump as we did with the current one I have now. I'm sure it will be simple enough to do. When i looked online, they show you videos of how you use it and the beeps it comes with if there's a problem. When I heard them, i kinda thought they sounded like the beeps I get on the maps on the CI! It was very strange!

So I get the new pump next monday, but the new feed packets come later, so I will have to keep using the current pump I have at the moment and I will eventually start using the new one!

It comes with its own little rucksack to take it places if need be and you can walk about with it which is better because with the wire on the pump i have now i cant really walk far unless I drag the pump around with me!

Bring on the Feed!

7 May 2010

Cochlear Art...

Ever since I've been at the nerve centre doing my painting, I have always been looking for ideas and inspiration of what to paint and with some help from friends and the boyfriend for tips, I have created some Cochlear Art! Below are two different paintings I have done.

1 May 2010

Brow suspension email...

As you know from the Newcastle blog, I was waiting for someone to be in contact with me about the brow suspension lift that has had the procedure done. Today I got that email, and he hasn't had the same way of procedure because he had some tendon taken from his leg to do it but he is having the sillicon one done on the other eye in June so I might wait til then when he has had it done and I can ask him how it went and see the difference in his eye. I have asked him some more questions so im waiting for yet another email from him! Then I will make my choice wether to go ahead and put myself on the waiting list or wait ttil he has had it done himself.