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

27 May 2009

How my 15 year CI review went...

We set off early because my parents wanted to go to a shop but the SAT NAV was causing havoc and we couldn't find it so we set off to the Yorkshire cochlear implant centre. I got to see Jane Martin and Lyn Jamieson who I have pretty much known the whole 15 years of having the cochlear implants and had a good catch up with them for a few minutes! hehe
I then went into the brand new audio room with Salim my audiologist to begin my review. He checked my ears and then the cochlear implant electrodes inside my head which were both fine.
It came to discuss me getting the Freedom CI and he told me not yet because they dont have the funding at the moment to give the Freedom to the people who have the 3G and are just giving it to the newly implanted patients at the moment. It costs £3, 000 to upgrade from the 3G to the Freedom and the YCIS dont have that funding yet to do it. Once funding is cleared and sorted, however long that may take! they will give me the Freedom to everyone once but when I DO have the freedom, they cannot give me my 3G esprit CI back if I don't like the Freedom because in the future, they wont be making the 3G anymore hence they won't be making parts etc...
Salim told me that the with the Freedom, the microphone is more senstive so it may pick up more background noise and that its more chunky at the bottom which I was a bit unsure about but when it comes to it, I'll have to keep the freedom and get used to it basically! But for now it's sticking with the 3G til the funding is cleared!
I now do not have to go back to the YCIS for 5 years now for my 20 year review unless I have any problems with my cochlear implant and they call me in for something.
Today was also the last time I would see Salim because he has been headhunted by a cochlear implant company so next time I will have a new audiologist which will be very strange because yet again Salim has been there from the beginning too.
As a good result of my 15 yr review, I decided to put some purple in my hair... but it did not work!! booo! I'll have to try another hair dye kit! hehe

17 May 2009

My 15 year cochlear implant review...

On the 27th of May, I have my 15 year review at the new cochlear implant centre! I don't know whether they are going to offer me the new Freedom behind the ear CI. Although if they do, I am able to keep my old mapping because I just hate the slightest change in my mapping. Im sure i'll put up a mini fight if they want to put a new mapping in and stick with the 3G but maybe since I've had the 3g esprit for a good couple of years now and i'm quite used to it. Im not sure if i can make the change to a different BTE but if they offer me it, I'm going to try it out at least see if it makes a difference. I never do like the change of a mapping when its just been changed! I think it sounds all funny but I always give it some time to get used to it and maybe put the old mapping on another setting on the CI if possible if I can't get used to it!
The only thing they said to me last time I was at the centre was that because I have an old version insdie my head that some of the features on the Freedom may not work with it. Thats the least of my worries anyway! I just want it to sound ok! hehe
but 15 years, its gone by so fast, its come to the point I hardly notice it on my ear anymore! I sometimes have to double check I've still not got it on when I'm in the bath! hehe
The review should be intresting! :D I'll let ya know how it goes!

11 May 2009


I need'nt have got upset about my weight since the bloody Wii fit scales are WRONG!!! When I stepped on the Wii fit weighing scales, it noted that I was edging on 6 stone at 7st 1 but I decided to try the REAL weighing scales in the kitchen and it turns out im 7st 7. which isn't that big a drop from 8stone 3 that I was after all the PEG feeds and dropping to 3 nights a week. I got upset because of the bigger drop and thought I had lost all that weight which some people would LOVE to do. But me on the other hand am different, in this day and age with everyone trying to lose weight, I'm trying to put it ON!
I'll be weighing myself on the REAL scales from now on, save me some upset!

10 May 2009

I wish...

  • I wish my weight would stay stable at 8 stone 3 as I've dropped down to 7 st...
  • I wish the last few years hosptial wise never happened...
  • I wish I didn't have to make the decision whether I should have this eyelid lift procedure...
  • I wish that in the future there will be a moment where I'll actually think I am going to get my PEG removed...
  • I wish that I could eat a whole variety of foods and wasn't fussy as hell, life and teatime would be so much easier...
  • I wish my brother would talk to me more...
  • I wish I was a kid again, because I coped so much better with hosptial stuff
These are the things that have been going through my mind the last few days, of course it may be hormone charged of that time of month but they are very real things that I wish were better and those things get to me and make me upset. Any other time, I would be totally positive and these rare times that I get down, those 7 things seem heavily on my mind.
Im grateful for the friends such as the C.I friends that I have met in the last year or so thanks to this blog, etc Vivie and Kara, they understand me and hosptial stuff and don't half make me laugh when I'm down! :) and meeting my lovley boyfriend who makes me feel so very happy!
Although lately, I've noticed that nothing of my upsets have absolutly nothing to do with my cochlear implant because thats still fantastic and it's so much a part of me, that I dont't notice it anymore what with all the more serious hospital stuff. It may have been the very first thing I had operated on me but I love it! I don't know what I would be like if I could'nt hear music or voices. It makes such a transformation to people's lives.
Anyway, I'm feeling much happier today and I'm goinna do me some cross stitching! :) After all, I'm only human to get upset now and again. x

7 May 2009

My Latchhook! :)

it took me 2 weeks to do this one. Not too bad!
Don't know what to do with it now it's finsihed though...

5 May 2009

Spontaneous things...

Since I have had my cochlear implant, it wasn't so bad to do spontaneous things. I could still sleep at friend's houses and things like that. I could just put my cochlear implant on a piece of paper on a table safe from things while I sleep and I always had spare batteries in my bag just in case.
Nowdays, it's a bit harder what with the PEG, athough it's not that much of a change but I have to organise if I'm staying out. I need to bring my syringe with me to flush my PEG with water at night like I do every night and morning!
Ah, I'm not too fussed about it anyway, I've been more of a organised person than an spontaneous person! :)

4 May 2009

Latchhooking away...

I haven't wrote on the blog for a bit so I apoligize for that. I have been latchhooking away at the new kit I got! ive tried to do 10 lines a day. Although, I haven't really got to doing 10 lines every day what with distractions etc... but im almost finished with 20 lines to go! Most of you probably don't have a clue what I'm waffling on about but I'll show you when it's done! :)
I have been feeling and looking sleepy because of my eyes. I think it's the lack of sleep due to my bad arm... I don't like to sleep on my cochlear ear although I have in the past but not for long. I prefer my right side to sleep on. I forever feel like feel llke the fairytale " the princess and the pea" because i still feel things such as the mattress springs even though I've got a duvet or 2 on top of it! It used to be much worse when I was skinnier. Even now I notice a difference of my right side being smaller than my left side as I've always slept on it.
I am currently enjoying hearing the rain come down at the moment as I can hear it pattering against the wall and the window. Quite soothing! :) I shall post a video of my latchhook soon!