In hospital for 16 years, the first 7 in an iron lung, then in 1971 John married Maggie and for the next 35 years and until he passed away in 2006, his home was Breeze Cottage.
EXPERIENCES OF A LIFETIME ON A VENTILATOR
by John Prestwich
I have been asked to write about my experiences of being dependent
on a ventilator. Since contracting bulbar polio on my 17th birthday
in 1955 all the muscles below my chin have been totally paralysed. I
cannot move anything – I can’t even lift or turn my head. This
paralysis therefore includes all my respiratory muscles which has
meant that for the last 47 years I have been completely dependent 24
hours of the day on a ventilator to keep me alive. This in turn
means that I must have someone with me 24 hours of the day. For the
first 16 years I was permanently in hospital (no benefits, no
compensation, no one to sue!) For the first 7 years, 99% of my time
was spent flat on my back in an iron lung with a reverse view of the
world seen through an overhead mirror. For the first 2 years I also
had a tracheostomy, so when the iron lung was opened for nursing
purposes, my breathing was maintained with intermittent positive
pressure (I.P.P.) through the tracheostomy until such time that it
was finally closed. I then used I.P.P. via a mouthpiece. Once my
tracheostomy was closed I began to get ‘itchy feet’ and wanted to
get up. A wheelchair was found and I began to occasionally get up
for about an hour using I.P.P. supplied by a pump with bellows and a
mouthpiece. This pump was operated by mains only so when I
eventually wanted to go further afield, it had to be pumped by hand
(in those days - the late 50’s - there was no such thing as a
12-volt battery pump.) Crunch time came when I was out in the West
End of London and the bellows came apart! Panic stations ensued from
those who were with me! Happily they managed to make a very speedy,
temporary repair and we rushed back to the hospital as quickly as
possible. This experience prompted me to personally investigate the
possibility of getting a 12-volt operated I.P.P. pump manufactured.
The outcome was that one was ‘invented’ and made for me in 1960 by
Mr. East himself of East Radcliffe at Oxford. He charged me £55 - I
still have the receipt! And I still use it in a dire emergency! It
is very basic, but it revolutionised my life – I even used it to
keep me alive on a day trip to Paris. When I was at the Lane Fox
Respiratory Unit a few years ago I was understandably very
interested to note that there was someone on the unit using an
updated version of my original.
Around 1964 I ‘discovered’ other types of negative pressure
ventilators and managed to persuade the powers that be to at least
allow me to try them. (By the way – a negative pressure ventilator
is one which draws air into the lungs, unlike positive pressure
which pushes air into the lungs – e.g. via a tracheostomy.) I was
more than delighted when I found I could breathe adequately with a
cuirass ventilator – proved by my blood gasses which, as one
consultant put it, have since remained boringly normal! For me the
biggest bonus was that I was no longer flat on my back in the iron
lung – I could sit up in an Egerton chair/bed and see the world the
right way round! This cuirass, with its neoprene seal, fits over my
chest. A tube is attached to it, the other end of the tube fits into
a mains operated Cape Cuirass pump which has large bellows. Each
time the bellows are extended, air is drawn out of the space between
my chest and the cuirass, making me breathe in. When the bellows
close, the negative pressure is released and the natural recoil of
the chest wall makes me breathe out. I have the pump regulated to
give me 16 breaths per minute and there is a valve which regulates
the depth of breath I require.
There are times (which I’d rather not talk about!) when I still need
to use an iron lung. This happens when I get a chest infection (I
can’t cough either!), or when I’ve had surgery. On these occasions I
go into the Lane Fox Respiratory Unit at St. Thomas’s Hospital,
where I am cared for by an outstanding team of professionals, who
have saved my life on more than one occasion!
In December 1971 I married Maggie (my Occupational Therapist) and as
she was prepared to provide over 95% of the care I must have, after
16 years in hospital I was able to leave and we set up home
together. It was a pure coincidence that it was the same time that
the Attendance Allowance came in to being – all £4. 80 a week - BUT-
it was the first time in 16 years that I’d been given any financial
help because of my disability! At home my breathing is maintained by
the mains electricity operated Cape Cuirass pump. We have therefore
always had to have a back-up system for the many times when we have
had power failures. For many years this back-up was a petrol driven
generator housed in our garage. After having been rudely awakened by
alarms and having to go out into a freezing cold, pitch dark garage
in the middle of the night (why is it that power failures are always
in the middle of the night?!) to start up the generator was not one
of Maggie’s favourite tasks! However, we now have a 12-volt battery
system which automatically cuts in and lasts around 4 hours, which
so far has proved adequate. Problems arising from the Cape Cuirass
pump are few – it is so ‘basic’ there is little to go wrong. Over
the years it has had to have various parts replaced and at times it
is noisier than it should be but, touch wood, it keeps going!
When I go out, because the Cape pump is anything but portable, to
supply my negative pressure I use a Monaghan pump which is portable
and which operates on either mains or 12 volts. (Incidentally –
these Monaghans are no longer made!) This pump fits on the back of
the chair/bed on which I live 24 hours of the day. When travelling
in our adapted vehicle it plugs into a separate 12 volt system which
is kept fully charged by the vehicle’s alternator whilst we’re on
the move. However, because it is a more complicated piece of
machinery (it operates with a centrifugal blower rather than
bellows), there is more to go wrong. It has proved this by breaking
down on many occasions whilst we’ve been out – once whilst the two
of us were travelling at 70mph in the middle lane on the M4! In such
circumstances, I have to resort to using positive pressure via a
mouthpiece to keep me alive until we get home. Then some years ago
these mouthpieces ceased to be manufactured which caused me a real
problem. The mouthpiece has ‘nipples’ on the inside of the flange,
which enables me to grip it between my teeth (and no - the scuba
divers’ type are NOT suitable!) After many years of searching for a
suitable replacement (a long story!), I was eventually forced to get
a firm to make a mould of the original (at a personal cost to me of
£1000). The first ‘run off’ provided me with a dozen new mouthpieces
- another problem solved!
My biggest ventilator problem over the last 47 years arose some 10
years ago. Using a cuirass 24 hours of the day means that it needs
to be replaced with a new one every 3 to 4 years. However, the
USA-based, one-man manufacturer of my cuirasses disappeared and the
supply ceased. To put it mildly, this left me in a very vulnerable
and somewhat desperate situation! Another long story! I was
eventually resigned to trying and using various ‘home made’ efforts.
These included one made by a friend in his garage from a bag of
fibreglass mix, moulded over a cast of my rib cage! We then took
this somewhat inelegant offering to another friend who owns a
vehicle upholstery workshop and he made the seal. It wasn’t a
beautiful object but at least it worked and kept me alive! In all it
took us over 7 years of research and hard graft before we eventually
found a medical firm which had the correct materials and expertise
(and the Lane Fox Unit’s blessing!) to produce what I needed. Even
so, once made, Maggie has to take them to an upholsterer in town who
makes the neoprene seals. I’ve now been using them for a couple of
years so hopefully that problem has finally been solved. I sometime
ask myself – what’s next?!
I must end by saying that reflecting in this way over my life’s
experiences on a ventilator has been for me a really interesting
experience! I hadn’t fully appreciated quite the full extent of my
personal involvement in the pursuit of my life-support equipment!
