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

30 September 2008

Curious PEG...

I’ve had people ask about WHAT is a PEG? and WHY do I have it? What is it used for etc? so I have done a Q and A to answer any curiosity about it. It may look freaky, but it's nothing to be scared about. I was unsure about the decision to get a PEG and thought long and hard about it as I was 22 yrs old when I got it and who wants to lumbered with a tube coming out of their stomach but I felt I had to go for it in the hope that it might help me put some weight on and make some parts of me a bit better...

What is a PEG: PEG stands for percutaneous endoscopic gastrostomy shortened to PEG.
What is it used for: It is used for different kind of medical conditions where a person may not be able to eat or swallow for a short or long term period of time.

Why is it used: A PEG is used to help the person using it receive essential vitamins and nutrients that you may not get from not eating or because you can’t eat due to a medical condition.

Where a PEG is placed: A PEG can be used to in 2 different ways. For short term, a tube can be put down your nose and into your stomach which is put there by a doctor. For long term, it can be a tube put directly into your stomach through your stomach wall which is put there by surgery. I have had the nose tube in 2003 for a month & had it successfully taken out. I now have the PEG in my stomach and still eat with my mouthh too.

How long will I have it? It can depend on the person and the situation; a doctor would prefer you to have it as short a time as possible. I have had mine for a 16 months and it has done me the world of good what with my weight although I don’t know how long I will have it in for.
How am I fed: I can still eat by mouth and I get fed 2- 3 nights a week at the moment by a pump that pumps the liquid food in to my stomach through my PEG.

Does it hurt? The nose PEG can be uncomfortable when you have it put down your nose but after it’s in, you hardly feel it. The stomach PEG can be a little trickier as it is done by an operation so you can feel a bit of discomfort in your PEG area afterwards and because it’s an open wound, you can be vulnerable to little infections in the PEG area which can be a bit sore which are rare if you look after it. You are also aware that it’s a tube coming out of your stomach so if it catches on something, it can hurt. I always tuck mine in whatever trousers I have on! My feeding over night is ok too because I don’t feel anything.

Why was I give the PEG: My doctor suggested giving me a PEG because I wasn’t getting enough nutrition and vitamins because I’m a fussy eater due to the way I grew up and ate easier foods due to my mitochondrial condition and the possibility that it might help me put some weight on as at the time I was 6 stone. I’m now 8 stone.
How do I look after it: I look after it by flushing the PEG with sterile water with syringes I get from hospital every morning and night. I also flush my PEG before I put my feed pump on. I also keep the area of the PEG clean so I don't get infections.

What the PEG done for me: it has helped me gain 2 stone of weight and look much better in myself than I did (I’m now 8 stone)and it helped stop my occurring ear infection that I had for years.
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