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

29 November 2009

My eye situation.

For the past 2 years, the docs at Newcastle have been asking me about a eyelid lift procedure and they did so again at the last PEG op too. I never give them a chance to talk about it because I don't want the docs to touch my eyes surgically even if it is just my eyelids. They aren't so bad when im wide awake but at worst they look like this

and it gets me down at times. The droopyness is because my eyelid is a muscle and because of the condition I have, the muscles get weak therefore my eyelids don't have the strength to open fully especially when I'm tired. It is a symptom of the condition which is Mitochondrial Multiple DNA deletions.
I know they may eventually get worse so I'm going to have to force myself to talk about the procedure when I go in March 2010.
I was scared about the PEG procedure but this eyelid procedure, even hearing about it basically terrifies me. My mum would love me to have this op done because she knows my eyes were pretty when they are open enough. She says "you have lovely blue eyes, we want to see them"
Now every time i see that they are droopy I feel ugly and people have often commented on them in the past saying am I drunk when I've never touched a drop.
I cry about it sometimes too. I know when it comes to march, the reality is going to hit me and we need to talk about what I've been avoiding for so long.
Doc's say it just a little cut in the eyelid to bring it up, but its never just a cut is it. This is my face we are talking about. It's right there in people's faces. I wish to speak to someone who's had it done first to see the benefits. I don't want to go into this without any research.
My parents keep saying its basically cosmetic surgery on the NHS! They are now so closed when I'm tired my eyelashes get in the way of things and make things fuzzy. I don't know how it will affect my double vision either.
I'm just not going to think about it now til the time comes to talk about it next year.

25 November 2009

Swine flu jab...

When I go the letter to have the Swine flu jab, I originally wasn't going to have the jab done but I went to the docs today for a different reason and they recommended I had the Swine flu jab done. I didn't want to risk being hospitalized with it if I ever got it so I decided to get it seeing as I was there anyway. so ill have a dead arm for a few days AND its on my sleeping side (i can never sleep any other way than on my right side) Prepare for a grumpy Laura without sleep! but its better safe than sorry and kept healthy as I could possibly be!

16 November 2009

Nursing a chore...

Every Monday since I got the new button PEG i have to get up early to see the nurse that comes and changes the water in the balloon in the PEG which has to be done due to the saline water evaporating. The nurse is teaching my mum how to do the saline water so that she can do it and the nurses dont have to come so often which i will be glad because every time they come round they make me think i'm this ill person which I'm not where my mum and the nurse get ov bags of medical stuff that mum keeps. Things like the water syringes and the creams and the tubes for my PEG. it can feel a bit endless sometimes but I know the nurses are only for a short time. Im not looking forward to getting my PEG changed after Christmas in January. The nurses assure me it’s not as bad as having the tube PEG out (which by the way was horrendous) I'll believe it when it’s done ha ha. I'm glad to get out of the house after christmas too when I get to go back to my volunteering. I hope Christmas doesn't take it's toll on me and I want the holidays to last!

For now I'm keeping busy with the tapestry!

9 November 2009

My Pro/Cons and rules for the cochlear implant...


You are still deaf without the external part on so you are still part of the deaf world but you just have the beauty of both hearing and deaf worlds.
I can listen to music
I can hear my family and friend's voices and still lipread
I can hear the TV without looking at the screen (sometimes without subtitles!)
I can hear a person without looking at them
I can hear birdsong, rain and all kinds of sounds
I have good speech
I have had my cochlear implant for 15 years now *even if i did have 2*
I can switch off whenever I want if i hate a sound or just have a headache!
Having the BTE small and discreet
I can tell the difference in accents and voices and different sounds.
It's not 100% hearing but it's good enough and clear enough once you get used to the mappings.


Group talking can be a pain with lots of people talking at once
Background noise such as loud music or lots of talking in
The operation eek
The programming of the ci. i hate having my map changed.
You need be careful of your implant area ie dont bump the area very hard!
When i'm in the car on the motorway, all i hear is the roar of the engine! argh

Other things to know about when you have a CI.

static electricity - ie a tv that has been on for a long time or clothes, you need to be careful not to touch them with the wire of the ci.
Air travel - you need to switch off the cochlear implant when the plane is taking off and landing, i tend to leave my cochlear off the entire journey from switching it off before getting on the plane and turning it back on gain when Im off the plane (cant be too careful!)
Meningitis- before you get the implant, or even after make sure you are protected against Meningitis by getting an injection.
Ear infections - this is an urgent matter, if you have an ear infection go see your cochlear implant doc as soon as possible.
X- rays - are fine although I usually take external part off for an x ray.
Any kind of electric surgery is a no no. If in doubt, consult your cochlear implant centre.
Shop security systems - are fine I've never had a problem with them but if you do,, you can show them the cochlear implant card
Airport security systems - these are different to shops and will scramble your mapping so ask the airport for a frisk search instead. I have never had a problem with this and airport understand. if they don't show them the cochlear implant card.

If in doubt with anything, contact your cochlear implant centre and they will always be happy to help you! :)

Hope this helps! x

4 November 2009

Gloomy days...

The nights are drawing in now an getting dark early, its sooo gloomy, it makes me feel down! But I am much looking forward to seeing and hearing the fireworks and christmas is soon too.
I have been keeping myself busy doing tapestry and wasgijs (look it up if you arent aware of them)
I have made a group on Facebook for mitochondrial people to join but so far no one has joined...
i feel a bit lonley regarding the ocndition because I dont have anyone to talk about it with apart from the docs who dont have it but research it Id like to see how other people cope with it etc maybe I really am a rare gem.
I get a lot of cochlear implantees on the blog but no mitochondrials even if it was just one person, I would be happy because I'm not alone. There's not a lot of people out there with the same condition I have but if there is, I haven't found them yet! I'll keep trying anyway!

1 November 2009

knitted character...

Halloween is now over, I look forward to Bonfire Night and hearing all those bangs, whistles and booms of the fireworks!
The nurse is coming over tomorrow to change the water in the balloon of my PEG. This is the balloon that keeps it in my tummy! I get this changed once a week, it can be 2 weeks but the nurses in our town say 1 week because the water in the balloon can evaporate.I
I'm still working on wasgij's and tapestries alike as well as drooling over Harry Hill's TV burp's knitted character! hehe hes well cute! :)