This is an excerpt of a diary, written by a Lady who had been at home, mechanically ventilated with a Tracheostomy, until recently. Sadly she has passed away earlier this year.
My name is Lucy and I live at home, despite being fully ventilator dependent with Tracheostomy
I am very pleased to write about mechanical home ventilation with Tracheostomy, as I believe a lot
of people will find my experiences interesting, including other people who are ventilator dependent
with Tracheostomy in ICU’s or are ventilator dependent with Tracheostomy living at home already,
as well as their Families, doctors, nurses and anybody else interested in the subject.
I have found my way, every day starting anew, looking for my opportunities and my possibilities,
despite all the obstacles that I am facing. I have to accept my way, even though other people have it
much easier, even though I am challenged every single day, even though I don’t understand why.
I have to go my way, even though it is a stony and rocky road, with lots of obstacles, even though I
am by myself. I stay on course, even though I am tempted, but I have to trust myself in order to
reach my destiny.
To be ventilated is a horror vision for many people. In the not too recent past, mechanical
ventilation was the equivalent to a death sentence, as death was the first thing people thought of
when thinking about mechanical ventilation, amongst other tubes, in Intensive Care.
Intensive Care is a relatively new concept(the first ICU’s emerged in the 1960’s), even though we
almost take for granted the advancement of medicine, the equipment and the nursing care in
Intensive Care in this day and age.
Today, modern medicine however is very advanced and has gone a long way, so that mechanical
ventilation with Tracheostomy is not only improving life expectancy, it is also improving Quality of
I have been mechanically ventilated with Tracheostomy for 8 years and those 8 years have been the
most precious years of my life.
In my diary, I love to share, inform, reduce fear and take down the barriers that people have in their
heads that might make them think that mechanical ventilation with Tracheostomy cannot be done
outside of Intensive Care, whilst also looking at the downsides.
I’ll never forget the 17/06/2003. On this remarkable day I was discharged out of Intensive Care after
9 ½ weeks. Since that day I have been living at home, despite being ventilator dependent with
Tracheostomy, thanks to the help of a specialised Intensive Home Care nursing service, that is
exclusively working with Registered Nurses with Critical Care experience and they have been
improving my Quality of Life dramatically. Ever since, I became more and more independent and I
am basically in charge of my life and my care, telling the marvellous nurses what I want, how I want
to structure my day, what activities I want to do and so forth.
On the 13/04/2003 I got admitted to Hospital as an emergency admission, due to my progressive
muscle dystrophy, that caused me to retain too much CO2 and I became unconscious, fell out of my
wheelchair and broke my neck of femur.
The fracture only got diagnosed 8 days after admission to hospital and I ended up with a Total Hip
replacement on the 22/4/2003.
On the 5/5/2003 I had a Tracheostomy done, because I got exhausted pretty quickly when breathing
without ventilator support.
This was a massive event in my life and most Nursing staff within my team, witnessed from the very
start, what massive physical and psychological issues I had, but they always supported, encouraged
and guided me, thanks to their specialist skills and their positive attitude- even though the nursing
team felt challenged with the situation as well.
Today, I and my nursing team often think back of the initial challenges, how we dealt with them and
how we overcame them and we watch and stand in awe, how we managed to come such a long way
with such successes in 8 years.
I am grateful for every single day and I am looking into the future full of hope and I enjoy every
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