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


11 October 2017

pneumonia round 2...

its been 3 weeks since i've been out of hospital suffering pneumonia again. i had good help in my local hospital the doctors were great knowing about mitochondrial disease  during my time in hospital they gave me neutralisers and oxygen to help my lungs clear which took over 2 weeks and i was nil by mouth the whole time because the doctors were worried about food and drink going in to my lungs  (i was gagging for a cup of tea!!)  all i could have was the apple juice i use to drink my anti depressants and little sips of water and spit it out they didnt want me to swallow it. I got so hungry i was jealous of other patients getting their cup of tea!!
 
i had the ocuupational therapists to help me get the junk of my lungs using a machine to improve my breathing and help me cough better (it involved me breathing in then sucking my air out which was scary because you feel like you cant breathe but it does the job!!) 
i also had help with walking again as i still felt weak on my legs after being bed ridden for a week and hooked up to antibiotics and water to hydrate me, the  hospital gave me a walker to take home which helped helped for the first few days til i got stronger.

The dietitians kept an eye on my wight by having my hooked up to formula going through my PEG and making sure i was nil by mouth.

After 2 weeks of being in hospital i was allowed home but i had to be nil by mouth for a further week as they were not sure it was safe for me to eat or drink til i had an appointment to show that food and drink were going down the right hole. 

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