Blackout - Call 999

I feel sufficiently recovered to tell you about the events of Sunday night. Those of a nervous or sensitive disposition should skip this post and find something nice to do like decorating a pine tree.

Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.

By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.

And then there was a power cut.

The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.

My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.

Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.

Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.

Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.

By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.

Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.

I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.

Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.

I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.

Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.

I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.

This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.

Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.

Seasons greetings. Until next time...

The Honeymoon Story (Part Three)

At last, the final part of the honeymoon story in which we find out why I have of a fear of Lakeland Plastics.

If you haven't read parts one and two then you might like to click here and here to catch up on this tale of lakes, love and the emergency services. I'm not sure why it has taken me so long to write part three, perhaps it is because I'm still living with the consequences, or may be I just forgot. Grit your teeth (l really mean that), and let's go.

Have you ever heard of Lakeland Plastics? Nowadays it's just called Lakeland and sells kitchenware and useful type stuff for the home. 15 years ago it was primarily a catalogue based company with very few retail outlets, the biggest being the factory outlet at Windermere in the Lake District, the company's head quarters. Polly, as soon as she learned of our honeymoon destination, determined to visit this homeware Mecca. If I remember correctly she particularly wanted a muffin baking tray, but more eagerly she wanted to gaze upon the many kinds of plastic based storage solutions the company had to offer. We were, after all, just setting up home. So, after visiting the home of Wordsworth or Beatrix Potter, after cruising the lakes on steamboats, after dining on locally caught freshwater fish, visiting tarns and becks, fells and dales, taking in some of the country's most beautiful vistas and panoramas, Polly would ask, “When are we going to go to Lakeland Plastics?”

Towards the end of the fortnight, the early October weather turned more unsettled and a day taking in the shops of Bowness and Windermere seemed quite an attractive proposition. There were several bookshops I'd spotted and right at the top of the hill, next to the railway station was the afore mentioned Lakeland Plastics. Polly, with uncharacteristic patience, indulged me as I browsed shelves of local history books and biographies of Wordsworth and Arthur Ransome, and flicked through endless watercolours of the local landscapes, gently herding me up the hill towards her ultimate destination.

Finally we were inside the strip-lit outlet of all things kitchenware, polyurethane and pastel coloured. I feigned as much interest as I could in breakfast cereal storage options and plastic freezer boxes. Polly was remarkably restrained, only buying a few bits and pieces but taking note of things she would order later, so we eventually left the store relatively unburdened with carrier bags. A fine Cumbrian drizzle had started so we decided to head back to the warmth and dryness of our hotel. Polly hung the bags on the back of the heavy duty, out door powered wheelchair, the Cheetah, and we set off down the busy hill, lined with mostly inaccessible craft and gift shops.

The pavement (side walk) was much too narrow for us to walk side by side so Polly hung back a few feet. Something in one of the shop windows caught her eye and she paused briefly while I trundled on ahead. The drizzle turned to a light but coat soaking rain and my mind was fixed on getting to somewhere dry. As I approached the junction with a small side road the pavement steepened and slightly banked towards the road, the well worn, ancient, flagstones were greasy with the wet and before I knew it the wheelchair began to slide with a sickening, unstoppable inevitability towards the nine inch high curb and the busy traffic filled road. I pulled back on the joystick controller but the weight of the chair and the slickness of the ground beneath the wheels only produced a high pitched squealing sound and caused the chair to slew towards the side road. I heard Polly shout and felt her pulling on the back of the chair but gravity won out and the small leading wheels slipped over the curb, tilting the chair forward and sending me beyond the point of balance. There was a slow motion, plenty of time to see what was going to happen but nothing you can do about it moment, and I fell face forward from the chair. Polly just managed to stop the chair from following the over the edge and on top of me as I did a bone crunching three point landing, two knees and a chin, on to the rain soaked road. There was a shriek of brakes as startled drivers skidded to a halt around me and a kind of crunching, cracking sound as six of my teeth shattered. An awful lot of blood was being washed away from me and down a drain a few feet away.

Within a second Polly was kneeling beside me and crowd of curious and horrified on lookers had gathered. “Are you all right? Stephen? Say something.” “Uhggh. . .,” I replied. “Umph 'roken m' teef.” Little white pieces of enamel fell from my mouth. A local shopkeeper came rushing over carrying a small green box. “I'm trained in first aid,” he declared excitedly. “Sod that,” said someone else. “Call an ambulance.”

I don't know if you have ever lain face down in a Cumbrian towns main road, causing a massive tailback of traffic, but if you have, like me, you will probably not remember the experience fondly. It was cold and wet, shock was setting in, and the ambulance was taking forever to get there because some fool was lying in the road holding up the traffic. Polly had to stop well meaning people from 'helping to get him back on his feet' or practising their Cub Scout first aid training. My teeth began to chatter and that hurt like hell.

Later, much later, at a casualty unit in Kendal my chin was stitched up and I was given some painkillers. I asked to see a dentist but they looked at me as if I was asking for an audience with the alien leader of a small planet circling one of the stars in Orion's belt, so I was resigned to waiting until we got back to London. The inside of my mouth felt distinctly unfamiliar.

We still had a couple of days left of our honeymoon but by the following day my tongue had begun to swell and turn a fetching shade of black. Somehow the romance had gone out of it. By the time we were back at home my tongue was rubbed raw on the jagged edges of my teeth and I was slightly feverish. Miraculously I didn't lose any of my teeth. Six were cracked and broken but I didn't lose them. Even today if I run my tongue around my mouth I can feel the damage. And a shiver runs down my spine every time I see a plastic freezer box.

And so ends the saga of our honeymoon, our first holiday together. Fortunately this was not a foretaste of things to come. Over the last 15 years we have had plenty of lovely holidays, some of them without incident. (Not many, but a few.)

Bevan's Baby At 60

This week the NHS is 60 years old. I know it is a popular pastime to moan about the ever beleaguered institution and to prophesise its imminent demise but it truly is a wonderful thing. Just think about it, free health care from the cradle to the grave. Yes, I know we pay for it with our taxes but it is free at source when you most need it, whether that be after evening of binge drinking, drilling through your hand whilst doing DIY, or contracting a life threatening disease. Or, like me, have a congenital condition of the kind that makes insurance companies reach for the 'Sorry Closed' sign and avoid eye-contact with you. But how good is it? This good.

Yesterday morning, on the hottest day of the year so far, Polly and I got into our non air-conditioned van and drove in to London for me to attend the Lind clinic at the Royal Brompton Hospital as I do about once every six months. The Brompton is a hospital with a world-wide reputation as a centre of excellence for treating heart and lung disease and is a place I have been attending for the last eight years when I was first hurtled there in an ambulance with lights flashing and siren blaring after failing to recover from double pneumonia and escape from my local hospital's intensive care unit after 3 months. The lung wing of the hospital is based in a Victorian building and Lind ward is on the top floor. The waiting area is a long corridor packed with wheelchairs and people attached to portable ventilators and oxygen tanks. It's one of the few times I look at a group of people and think 'Cor, look all those cripples. I'm really fit.'

After a while someone cuts my earlobe with a razor blade and takes blood with which to analyse my gasses from. They check my BiPap machine settings and then it's back to the increasingly hot and crowded corridor where I slalom my way back through the wheelchairs, walking frames and oxygen tanks. We wait a little longer and then are invited in to a consultation room where I am seen by a doctor. We've met before and he is familiar with my condition. My blood gasses are just about okay but the time has come for me to use the ventilator for an hour or so during the afternoon to rid myself of excess CO2. Deep joy.

I hate using the BiPap during the day. I'm not that keen on it at night but when it broke down a few months ago I discovered what it was like to go without it. I'd spent the following day in a miserable fog of Carbon Dioxide infused headaches. So, love it or hate it, I'm stuck with it. Life with out it would be. . . well, short. The trouble with using it during the day is that it ties you down. You are connected to the machine via a mask and hose and the machine is connected to the mains via. a cable and plug socket. So you are stuck in one place for at least an hour. And they want me to do this every day. Now this is where it gets good.

They asked me what I needed.

I told them I needed a face mask that was suitable for use during the day. The mask I have been using is a small nasal mask which I fancy makes me look like a WWII fighter pilot, but in reality makes me look like a demented scuba diver. It is fine for sleeping with but if you move around it leaks and cold air under pressure is blown in to your eye. It also has a tendency to whistle tunelessly in time with my breathing. I also wanted a way to move around and if possible get outside, more than a few feet from a power socket, so did my BiPap have an internal battery? No. Go and see Steve said the doctor.

Steve is the ventilator man. Steve knows more about BiPaps, Cpaps and all things ventilatory than any one in the south of England. So, while Polly went to book my next appointment I took the lift downstairs to the sleep labs, where Steve hangs out. He greeted me in his usual friendly manner and after listening for a minute vanished in to a store room to reappear with a couple of items. The first was a new type of face mask that plugs directly into my nostrils and is so sophisticated it comes with its own CD-Rom and carrying case. The second item was a battery the size of a small paperback book. Steve apologised that it didn't come with a case but the company that supplied the battery changed extra for them. He reckoned that if you paid £500 (that's $997 or €631) for a battery you should get a protective cover thrown in.. He showed me how to connect it to the Bipap and then stuck a 'Property of The Royal Brompton Hospital' sticker on it and that was that. I wheeled away with both the things I needed to make using the ventilator during the day practical and comfortable. There were no quibbles, no money handed over, I didn't even sign anything. They just gave me the equipment for as long I need it. How good is the NHS? That's how good.

Happy Birthday!

In to the NHS

So there I was lying in bed on Saturday night. We'd had a pleasant evening, the boys had gone to bed and Polly and I had enjoyed a curry and watched TV and everything was fine. I'd dozed off but was woken by a dull ache in my left side. I did the manly thing and ignored it. Suddenly I'm sort of sick. I say sort of because what came up was clear but with flecks of blood in it: The pain grew worse. Polly woke up at the sound of me gagging and once she saw the blood realised I wasn't attention seeking. “Oh great”, she groaned. “We manage less than a week with out a medical crisis”. At the crack of dawn she rang the doctor and I stoically endured the pain and gagging. Croy-Doc, our out of hours GP service rushed into action and dashed to my sickbed by 2.00pm that afternoon. He looked at me cautiously and prodded my side and took my temperature and did the usual doctory things. “I'll call an ambulance”, he said gravely.

When the ambulance arrived, the paramedic and the technician looked at me lying in bed and gazed anxiously at the ventilator I was attached to via a hose and face mask. “Can he walk?” they asked hopefully. Once Polly had explained that I couldn't walk, stand, hop, skip or jump they decided to bring in the stretcher bed. My friend Stewart, who is a police officer and regards the other emergency services with respect but with the suspicion that they are only doing the job they do because they couldn't get into the police service, pointed out that they might get the thing in but they wouldn't get it out without tipping me on to the floor. The corners were too tight. Eventually I could stand it no longer and said that I'd get up and into the wheelchair. (You see I'm THAT brave.)

Once in the ambulance they spent several minutes securing the wheelchair. “There”, they said with satisfaction, “That's not going anywhere.” I, on the other hand, was totally unsecured. “What about Stephen?”, asked Polly. “Hold on tight,” I was advised. I did.

St Helier, our local NHS trust hospital, was built in the 1930`s It was originally an impressive art-deco structure, perched at the top of Rose Hill. Viewed from the south it was quite spectacular, so the council built a road on the north side, so now all you see is the back of the building, a rambling jumble of extensions and incongruous new add ons. I was guided into the ER and had a canular fitted to my arm so they could take blood. After a while we were moved to the Clinical Assessment Unit from where I was sent to X-Ray and had an Echo-cardiogram, labelled Nil by mouth and left to watch Polly gleefully drink a cup of tea. Sometime later a doctor came to say they would be admitting me to ward B6. My heart sank. Eight years a go I had nearly died in ward B6, if my sister had not been visiting me and noticed I'd virtually stopped breathing, I would not be here writing this. Polly would regularly come in to find several doses of medication placed out of reach on my locker. The nurses would sorrowfully tell her that I wouldn't take my medicine, “He can't move!” she'd explain again and again. “He didn't say anything,” they would counter. “He has a tracheotomy! He can't speak.”

Eight years a go the ward was filthy. There were specks of blood on the floor and walls. Suction tubes that are inserted into the lungs to remove gunk were used and reused, equipment didn't work and patients with infectious diseases were placed in beds next to patients with pneumonia. I had been moved to the far end of the ward, presumably to get better on own. Instead I caught double pneumonia. Eventually I was transferred to the Royal Brompton Hospital in an ambulance complete with blues and twos.

Eight years later the ward had changed beyond recognition. Gone was the huge single room lined with beds with a nurses station in the middle. Instead the ward is divided in to bays and single bed rooms, the whole place is decorated in a subtle shade of anti-suicide green. The place looked reassuringly clean. I was allocated bed 10, one of four in a bay. They took away the Nil by mouth sign and I was allowed a much needed cup of coffee.

Hospitals are not designed for disabled people. No, it's true. They are designed for the sick, the frail and the injured. Disabled people upset the system. They find it difficult to distinguish between the disability and the illness you've been admitted for. A case in point: my ventilator. I use a machine called a BiPap. It pushes air into my lungs and then negative air pressure draws the air out, the result is that the base of the lung is inflated and carbon dioxide is expelled. Ward B6 is the hospitals specialist Respiratory ward. The nurses are trained in using all kinds of ventilators. Except, apparently mine. The nurses looked at it with a mixture of curiosity and suspicion. The control panel looks as if it has been stolen from the bridge of the Starship Enterprise and the mask has a tangle of webbing that can make the Gordian knot look like something tied by a brownie. The nurses begged Polly to stay and set it up.

The next problem was getting me to bed.

More to come tomorrow if you can bare to wait.

Next time - The Diagnosis