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

1 August 2008

percutaneous endoscopic gastrostomy (PEG)

I went for a pre-op, I had the usual tests and the surgeon doing the operation told me the ins and outs of it all. He also showed me the PEG that would be going in my tummy! It looked so long but the surgeon told me half of the tube would be in my stomach.
I was really worrying about it now but my mum always assured me that when I put some weight on ill feel a whole lot better!

I went for my operation on 3rd May 2007 not exactly looking forward to it! I came with my mum to the ward feeling very hungry because I was fasting before the operation.
The nurse took my details and the nurse showed me to my bed, I stayed there for 2 hours before it was time to change into my gown and go down to theatre. I had asked to be put to sleep by gas first before they put my cannula needle in my hand as I was so terrified of having it after having so many operations.

The operation overall went well and I was back on the ward. Surprisingly I didn’t feel any pain but
I was feeling very weird and drowsy. In the ward my parents and brother were at my bedside and I couldn’t focus on anything, I was nipping my parents and brothers hands for some reason. I began to bang on the hospital bed bars too, I’ve no idea why! The nurses encouraged me to eat because i was still eating orally. I tried to eat some mushy banana and some yogurt as well as drinking orange juice.

After 4 days on the ward, during the night I texted my mum saying I felt unwell so she came in early the next morning. When she came in to see me, I was having trouble breathing, and mum rushed out to get a nurse.

The nurse saw me and told my mum to stand out of the way. They sent in a crash team in and they put me on life support. They inserted a chest drain, a catheter and all the necessary wires including a tube down my throat to help me breathe. As I kept pulling out my wires they had to sedate me.

I was rushed to Intensive care ward once again.
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