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

28 August 2009


I'm still exhausted and tired from my stint is hospital when I left last week, this morning I went for a blood test to send off to see if my liver count is back up to normal again. I hope it is! I don't want another medical problem! I will find out in a few days when it arrives at the docs! I'm getting quite used to blood tests! That's not normal! :P

The Abbot nurse also came about my PEG this morning too, she gave us more information about the "button" PEG and it would be better to have that instead of the tube one. It would involve a day stay in hospital to take the tube one out and put a temporary tube in. A week later, the nurse will exchange the temporary tube for a button PEG. I may not need to go to Newcastle for it so that's something. They will give me something that will make me go all sleepy and woozy when they take out the PEG because you don't wanna be awake if you tug on that. It can be uncomfortable!

I got upset while the nurses and mum were talking over me, because I never expected to have the PEG in this long and it's just a bit disappointing really. It was only going to be a temporary thing and now it's seems like it's becoming a permanent fixture of me right now. But at least having a button PEG will be smaller and more discreet than the tube one I have. I think the tears were also because I'm still so tired from leaving hospital too. I still don't feel 100% back to me yet.

A PEG is not really something you want at the age of 24, but I guess I'll have to put up with it a bit longer...

27 August 2009

Button or no button...?

My mum was takling to Newacastle hospital this morning, she was tellling her about my tube PEG, the nurse told my mum, in shock that do i really have the tube PEG at the age of 24?? and that I shouldn't have to put up with having a tube one at my age. So they were talking about the possiblity of giving me a"button" PEG which is one without a tube and less horrible to look at really... which is always a blessing.
The only thing I'm NOT looking forward to is having the local anesthetic to "yank" it out! and put the new one in...
I know it's only in the disccusion mode at the moment though but I was hoping I wouldn't have to have the PEG in long but as time goes on and it seems it is getting more possible it may be a permenant fixture of me for the time being. Oh well!

26 August 2009

Recovering and Article...

I have just got back from the doc's because of that wheeze in my chest. The doc told me that it should get better in time and I need lots of rest and I will be back to my normal self in no time!
Apart from coughing up all the time which is making my PEG area so sore. :( we got cream from the doc for it but I can't use it til Friday til the nurse shows us how to use it! Every time i cough, it seems to hurt my PEG area but I can't stop coughting... I also have the blood test to see if my liver function has gone back to normal from my time in hospital. I hope its back to normal!
On a good note, the article about my 15 yrs as a cochlear implantee has come up in the magazine "here and now"
here is the link if anyone would like to read it. HERE AND NOW page 16.
Now to rest!

24 August 2009

Cosy day...

The weather is rain pouring down, I can hear the rain coming down from the guttering again. I'm snuggled in my duvet on the couch following my discharge from the hospital. Last night I had a heavy chest which i keep trying to cough out but it's just making it! The Abbot nurse came today for the PEG and put a HUGE dressing on it. It's still sore too but the nurse is giving me yet another cream that should help with it. How many more creams and antibiotics can i take?? and its still not getting better?! argh they SAY my PEG is on the mend but the soreness says otherwise!

I'm also going to be put on 1500 calorie feed instead of 1200 to help me get back to strength and stronger. Hopefully it will work, i'm just exhausted all the time but i guess that's the norm of me coming out of hospital on Friday.

My heavy chest has got a bit better though after a few nights sleep.

22 August 2009


I've spent most of the time in my chair, feeling completely tired even though last night was the first night i'd actually slept the whole night through and i feel i am moving more better now. I have also had my first bath since I went in to hospital and left which was 5 days ago... boy was it bliss! :D I had washes in hospital but sorta with baby wipes and stuff like that with the help of nurses. Not the best cleaning routine...

My PEG is looking quite gross at mo... :( I'm hoping it will get better in the next few weeks or so. Not what you want after your birthday eh... but I am recuperating and drinking better now my swallowing is better. I'm still a little scared to try food yet and am settling for easy things like ice cream or jelly or custards/yogurts etc...

I am hungry but am still getting the feed over night. From now on, I can only get stronger again! Best reason to relax and get pampered with hehe! :)

21 August 2009

Hospital Part 2

I was given antibiotics and fluids through a drip and could only sip water through a straw, My tests were sent off and would be back in a couple of days. I was also sent for an ultrasound because my stomach swelled a bit due to all the fluids I was having. so my stomach looked hugeeee! I was wheeled to the ultrasound and it was found to be all fine apart from the low liver count, but that could go back to normal on it's own my doc said. I was fine sitting around drinking my tea through a straw, watching tv and reading magazines until all my results came back. Last night, my canula was removed after I no longer needed any fluids because I could drink as well. I was pretty comfortable sleeping better after having that taken out! All through the last few days I've had some injections in my stomach too to stop blood clots. I thought the injection sites looked like a smiley face! hehe

I was pleased to get all my tests back clear apart from the liver count one but I'm going to have a blood test for that next week. I'm glad to be back home and more comfy and can recover and sleep in my own bed! ahhhh! Thats yet another hospital trip over with!

Another ride in an Ambulance part 1...

After the boyfriend went back down to Bournemouth, I was still having trouble swallowing and coughing up all the time and the PEG still with infection and because I was having trouble moving about so mum thought it best to call the G.P, he said he would send me to A+E via an ambulance. I just wanted to feel better. The Ambulance came quicker than the last time! We only had time to stuff a few things in a bag for me in case the docs wanted me to stay longer. I spent 4 hrs in A+E waiting to be seen and when I finally got seen, the doc checked me out, took details etc and told me they wanted to put a canula in my vein to get some fluids in me and maybe some antibiotics if I needed some. Now when I heard that word canula, I got in a bit of a panic but to be honest I was just so tired because every move I made just exhausted me, even lifting up my neck! I had to feel sorry for my poor mum coz she hates needles and she had to hold me hand through it, bless her. They took some blood from me once it was in and sent them off for tests.

Meanwhile, after 4 hrs in A+E, they sent me up to a ward which happened to have my poorly grandma on. I was moved to a room on my own so that I couldn't catch anymore infections.
As I settled in my hospital for the night, I was upset and feeling a bit sorry for myself because I was so tired and I'd not eaten since my birthday really. I didn't want my mum to go home but visiting hrs were over now so she got me some magazines and there was a TV in the room (although only bbc and itv had subtitles...) When I settled down for the night, I also had my mobile although it ran out of charge during the night and I couldn't text anyone which was kinda sucky... (especially when I couldn't sleep because I could not get comfortable. I wasn't comfortable with the fact that I couldn't move when I'm laid down flat and I can't get up because of my weak neck. I was upset with the night nurses too because she didn't really help me in the way I needed to be helped and walked straight out the room when I needed her. :S I just didn't sleep all night and wished I had my mum.
I told the head nurse in the morning about it and she had a word with the nurses in question and things were better from then on...
(continued in part 2)

17 August 2009

Down and out (again...)

My Birthday went well and I went out with my family and boyfriend for a meal on the friday ( despite feeling a bit achey) but true to form it got steadily worse over the weekend... with my fustration starting to show I don't like to rely on other people concerning my condition. Having to rely on my mum to get me around the house is pretty crap for a 24 year old. It hasnt been this bad since 2003 when the condition first came to light.
I've just been up stairs to simply go to the loo and get changed into some new pj's on and by the time I got up the stairs, I was just exhausted! I havent been able to eat anything apart from hafl a packet of Skips since saturday because of my weak swallowing.. im getting a headache because of this and my damn neck wont support my head enough to stay up for 10 mins at a time so I have to take a break lying it down on the back of the sofa. At current, I'm drinking tea through a straw which is bliss.
The doctor and nurse came by earlier and they have given me yet more antibiotics ( i must have had about 4 lots of them now)
I was supposed to be going to Bournmouth with the bf today but he had to go home without me
:0 ( I'm sure thre will be other times though As Gwyn said to me earlier " its what going out with a bionic woman entails" I had to laugh hehe :0 )
I'm content at moment sitting in my chair with my lappy to talk to friends with.
Hopefully with this next batch of antibiotics and my PEG patched up, I'll start to finally get this damn infection sorted with for good!

12 August 2009


The PEG nurse came last thursday to get a swab from my PEG to see if there any infection in there. I got the result back today so I will be on my THIRD set of antibiotics...(sigh) but at least it will be the right antibiotics for the infection I have! I don't know why they don't just do that in the first place and I can avoid having 3 lots of antibiotics!
On another note, its my birthday on Friday and and my boyfriend is coming up tomorrow for the weekend! its gonna be greatttttttt!
I'm also looking forward to going to a bbq at my friends on saturday! I haven't seen him for a while and he's just had a baby niece awwww. :) so will be good to see him too. Just hope the weather stays nice and sunny!

I also hope it's clear tonight, i may stay up for the shooting stars! thats if im not sleepy! hehe

5 August 2009

Exciting times...

My PEG is getting better so thats something, Im listening to the drone of the washing machine which is making me a bit crazy and want to shut the door and block it out, rather than take off the cochlear implant!
Recently, I have been talking to a father of a cochlear implant user on facebook about meet ups because I have always asked my implant centre if there were any meet ups so you could meet other cochlear implantees but all I ever got was either "pen pals from another town" or "workshop" which I didnt want. I wanted to meet up with people who had a cochlear implant and discuss our experiences etc... but now we are closer to getting other families or users of cochlear implants together for a meal where we can all chat! it will be the first time I have met a lot of cochlear implant people all at once! It will be a good experience if it happens! :D and meet the people I've talked to online.
Also my birthdays coming up next friday and i will be turning the big "24" when did time go??I dont knwo what i will be doing for it yet thought. Im sure ill find something!