RIP John Prestwich MBE 24-11-1938 - 27-02-2006

Breeze Cottage

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.

 

 
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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!

   1.5.2003
 

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