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 April 2009

Good News...

I went on my usual 6 month trip to Bradford to see the cochlear implant doc. After all the sun we have been having, the day I was going out, it decided to rain! Just my luck!
The waiting time was as usual, long and slow! I finally got in to my appointment and he checked my bad right ear and declared it healthy! At last! Although, it can get sore at times because I mostly sleep on that ear. He then checked my cochlear implanted ear and he said all was fine!
Because my right ear is declared healthy, I no longer have to see my cochlear implant doc unless I need to. I was sooooo pleased because I have been going for so long to him with him checking my bad ear! 9 years in fact! cleaning it out and checking it out. Now I no longer have to do any of that! My ear is healthy! It will take some time to sink in but I hope i grasp it!
:0) All i need to do now is go to the cochlear implant centre if i am required to! woohoo! :0)
I'm very tired now after that day but its one less thing to worry about!

25 April 2009

Good to latchhook...

There are times when I get bored at being at home, so when i asked mum about things to do, she said there was a latchhook kit still in cubboard so I decided to get to work on it! I'm half way through it now! I shall post a video of it soon! :0) It's good to latchhook because it stops me from washing my hands sometimes. It requires concentation on the latchhook so I listen to music on the VH! classic channel while I'm doing it, the thing about this latchhook I'm doing now is very complicated with the colours and symbols! I have to be careful not to get them mixed up or not miss a single strand of wool on the lines or it will all go wrong!
My PEG pump got serviced today, i can't belive its been two years this may that i've had the PEG. it's gone by so fast and most days I hardly notice it's there and it's become a part of me now. I guess part of me will be sad if i ever got it taken out because I'm so used to it being there now and doing the water and the feeds. I hope i do get it taken out eventaully thought. I haven't weighed my self for a bit because the weighing scales we have keep changing everytime anyone is on them so it's hard to get an accurate weight! Which makes the new rule with the dieticans sucky as the new rule means they don't have to see us in person anymore to weigh us, just call us up now and again...1 How is that monitoring my weight? Surely she needs to see me to see how it is going? At least my parents would tell me if I was lsoing weight. :0D
Update on the eyelid lift, I spoke to someone who's mum had the procedure, and i feel happier about what may go on, and still have Qs to email to the doc about it. I'm still scared about the decision to actually go through with it thought.. :0S because only I can make that choice. I wish someone could make it for me but they can't.
I'm sure i'll get there anyway!

18 April 2009

More serious thinking...

I was so against the idea of an eyelid lift at first that I told the doctor I didn't want to hear anything else about it! But now I've looked back at previous pictures of me when I'm out and about, I've either deleted some or got annoyed because it would have been a lovely picture apart from my eyes... It never used to be an issue before so I don't know why it is now. I think it's because the older I get, the worse my eyes are gonna get and get ever lower over my eyes.. :0S so I'm beginning to seriously consider the procedure. It sounds quite daunting an eyelid lift... as to why I dismissed the idea straight away but doing some research on the internet where it's just a local anesthetic and a stitch to lift it up... but I need to find out more from the doc!

I remember that I was against the idea of a PEG too and I got that done, even though I had the trouble of not being able to swallow my food after the operation and the banana I ate went down the wrong hole and into my lungs so at least that my docs know from past that I'm not to eat after the operation until I'm strong enough and the docs will put the food through my PEG should I decide to have the eyelid lift procedure.

I think the sooner I get the procedure, the better chance my eyes will be able to adapt and maybe my double vision would get better. My doc says it has a good success rate with patients so I'll let you know what happens. I think I'll write me down some Qs to ask the doc and email him.

14 April 2009

Easter Weekend

I went down to Lymington, near Bournemouth for Easter Weekend to see Gwyn! <3>
As for the eye lid lift, Im still enquiring about it!!

5 April 2009

Eye worry...

I get quite worried about the fact I may need to seriously consider having an eyelid lift when I go to Newcastle next year..
Part of me worries something will go wrong and it will compromise my sight although I know they don't touch they eyes, just a cut and stitch of the eye lid, they say, calmly.. which makes me even more worried!
I recieved the review letter of the meeting with the doc at newcastle which I am a delightful young lady and mentions all my usual things etc and then the eyes.. and that I am reluctant to do the eyelift!
Would'nt any one be reluctant to do anything operation wise, after the experiences I've had with operations in the past and the doc can understand that.
I know that he says I must do this sooner rather than later and it would make my eyes better viewing and appearance wise. I just dont know though... :0S
I guess I trusted him with the PEG op but look where that got me! 5 weeks in intensive care and nearly died but I put on weight with the PEG and thats what matters because I look better with some weight on me but the eyes are another thing. At least I dont have to think about it til next year unless my parents keep bringing it up and telling me to CONSIDER it...!
I will consider but I'm totally unsure on a decision yet but like i say, won't think about it til next year! :D
On the other hand, i am looking forwrd to easter and spending time with my boyfriend next weekeend! :0D I feel very lucky to have found this lovley, sweetest guy ever! hehe <3