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


21 October 2009

The newcastle PEG part two...

After my parents had something to eat, we went on to the next section of the day which was going to the ward where they were going to do my PEG change. Yet more endless corridors of the hospital! We got to the ward where we sat in the waiting room for an hour after we signed in at the reception. The nurse that we saw before was going to do it for us so she took me and my mum to a side ward room and told me to lay on the bed. I wasn't sure what to expect... She told me it would cause some discomfort. I thought I was going to get an injection to numb my tummy area but noooo , she put numbing gel that did bugger all because when she started PULLING (yes literally pulling the damn thing out of my stomach) when I catch it on something at home, does hurt but that was nothing compared to the excruiating pain of when she was trying to YANK it out of my stomach! I tried to stop her pulling it but mum pulled me back and I just burst out crying because of the shock of the pain when it finally popped out of my stomach = and she put the new one in. Just like that, it was all over and I could relax for a bit on the bed! The nurse put a bandage underneath the new PEG because some blood has come out when she pulled it out. I didnt relax for long though because another doc came along who works with the mitochondral doctor Mr Turnbull so I had a few more tests to do to keep up to date. Like walking on a straight line and checking my eyes etc... The doc wanted to talk about doing my eyes again but I was in no mood to talk about doing another procedure!! No way! After all the tests were done, we were free to go home and I can chill out and recover and not have to think about anything else for a while! Although on the way home, I got thinking, in my lifetime with this condition, how many more proecedures will come up? Now it's my eyes but what else could crop up? :S It's gona be tough but i'll just have to get on with it when the time comes. For now, I will get used to my new PEG!
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