I can always tell when I need my mini tracheotomy tube changed because I tend to need more chest clearances. It can get annoying feeling your chest fill with fluid every few hours. The first days of my tracheotomy adventures were frantic, as the nurses were completely new to regular replacements. At first I visited the hospital every month to get it changed.
Extract;
...As mentioned in the last chapter my mini tracheotomy has to be changed every four to six weeks. Initially [2001/2] we went back to [the hospital] every month so that [the] doctor ... could perform the renewal process...
When I tried going home to have it changed that's when the frantic happened as I would have to rush back to hospital if anything went awry. I'm grateful for their help now as everything is stable and if I need to put up with a few extra secretions then it's a small price to pay for reliable changes.
Read more about my tracheotomy adventures in my DMD LIFE ART & ME!
EBOOK available here; https://www.smashwords.com/books/view/69702
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
All links available in my website here; http://duchennemen.net16.net/Buy-my-book-s/
Foreword
I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.
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