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

6 December 2016

streaming eyes...

im not having a good day i havent been sleeping that well these last few days and now im paying for it with streaming eyes all day. i never used to get streaming eyes til i had the operation on my eyelids and it rarely happens but when it does its horrible i end up with tears running down face blurry eyesight and a runny nose. it feels like a cold but its not. im due to see patrick at newcastle hospital when we go next year til then Mum has to  put antibiotic cream in my eyes. ususally mum has some but we ran out!  Also im getting fed up of the nutrition team keep changing my peg feed tube and syringes and that we have to put a little needle type thing on to use it then we throw it away. dunno what was wrong with the old syringes!  

20 November 2016

kanso cochlear implant

last week i was sent a letter from the cochlear implant centre saying i can upgrade up to the n6 and they gave me a choice of either going for the behind the ear or wireless kanso i had 7 days to do my homework and i was invited to Bradford to try the kanso and make my choice. 

i tried it on and asked my questions concerning it and i opted for the knnso as it suited me rather than the N6 i could wear ear rings again and wear glasses comfortably as they always clashed behind my ear with N5. I chose copper brown and sent off the letter. Now the waiting game begins til i get it! i am quite excited for it!  According to my brother hes interested in the bluetooth in it haha  i have made my choice to get the kanso i will receive it next year!

28 October 2016

patient information day 2016

2 weeks ago me and the parents went to newcastle's patient information day 2016 which they do every year its  always interesting to get more information regarding mitochondrial disease and meet up with old and new friends who ive met via facebook!

it was at a hotel this time and felt quite posh as we had name tags round our necks with our names on which we have never done before so it was funny and i felt important! ha ha

this year i was interested in finding out more about the 3 parent IVF which involves taking the "disability" especially hereditary conditions such as mitochondria disease  as maybe one day i might need should i want children. 

i also met up with some friends who i contact via facebook and its good to  see them i had brought my knitted bags for one of my friends faye  who has Leigh's syndrome so she could sell them to raise money for a cure for mitochondira disease and also the lily foundation which i feel useful doing something rather just stay sitting at home all day doing nothing!

i do wish i could do more though but at least this way im doing something! 

21 June 2016

cochlear check up 2016

I have been going well mito wise and every dr is happy for me for once haha l have a cochlear implant check up coming up since i haven't been for 5 yrs! will be good to have a check up and see if everything working as it should. i have been enjoying holidays with the family even if i do have to bring the wheel chair and meds with us!

11 April 2016

newcastle appointment 2016

i forgot to update this blog with what happened at my appointment this year! ive been relaxing and doing my cross sttiching!

firstly i met up with susan another mito fighter from our chats online and ou mito support group on facebook as she was there at the same time.
i had my weight and bloods taken as usual. We saw doctor Gorman this year as professor turnbull wasnt available. we were asked if we preferred to see professor turnbull  but we had already booked our hotel for the day. we were hoping to get some genetics results from 2 years previously but they STILL didnt have them! i wondered how much longer we had to wait for them but they assured we WILL get them this year! i did the usual mental tests and talked about my diet and everything is good so far and they arre happy and i am happy! well almost happy it would have been good to have those blood tests results as we have been waititng for so long for them but another few weeks or months wont make any difference!