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


16 November 2009

Nursing a chore...

Every Monday since I got the new button PEG i have to get up early to see the nurse that comes and changes the water in the balloon in the PEG which has to be done due to the saline water evaporating. The nurse is teaching my mum how to do the saline water so that she can do it and the nurses dont have to come so often which i will be glad because every time they come round they make me think i'm this ill person which I'm not where my mum and the nurse get ov bags of medical stuff that mum keeps. Things like the water syringes and the creams and the tubes for my PEG. it can feel a bit endless sometimes but I know the nurses are only for a short time. Im not looking forward to getting my PEG changed after Christmas in January. The nurses assure me it’s not as bad as having the tube PEG out (which by the way was horrendous) I'll believe it when it’s done ha ha. I'm glad to get out of the house after christmas too when I get to go back to my volunteering. I hope Christmas doesn't take it's toll on me and I want the holidays to last!

For now I'm keeping busy with the tapestry!

2 comments:

Anonymous said...

It is certainly interesting for me to read the blog. Thanks for it. I like such themes and anything that is connected to this matter. I definitely want to read a bit more soon.

Www.lozsmedicsljourney.blogspot.co.uk said...

Although the nurses are lovley and nice when they are here, they have nice chats with me etc im just not used to seeing nurses out of hospital. Ive never really got used to the fact i have to see more docs and nurses with this conditon i have therefore thats why i called the post nursing a chore.