Watch The Birdie

Once again Polly and I dragged ourselves over the speed-bump strewn roads of South London for me to attend the Lind clinic at the Royal Brompton Hospital. Once there, and having located one of the rare and obscenely expensive parking spaces, Polly vanished to have coffee with a clown doctor friend who lives conveniently nearby, pointing out that she hadn't taken a day off from working in a hospital to spend it sitting in another hospital, especially as she wasn't being paid. I sat reading and patiently went through the whole blood-letting experience so my blood gases could be analysed. Sometime later I was seen by a stereotypically efficient German doctor who informed me that my CO2 levels had fallen satisfactorily and that they won't need to see me again for a whole year. Polly reappeared and we stop-started our way back through the London rush hour just in time to take Sam to his first ever Beavers meeting.

I am, of course, delighted that all that faffing about in March when I had to stay at the RBH has paid off and that the changes of masks and BiPap settings have achieved what they set out to do, namely make me feel better. It is a slightly unsettling experience to be in a position where at least one aspect of my condition is improving rather than spiralling ever downwards. It is my ambition to confound all those health professionals who anticipate the worse. Viva Stephen!

On a completely different subject altogether, Polly, as you may remember if you have been paying attention, has spent months renovating my sisters house in Surrey while my sister runs what's left of the global oil industry. The house is still looking for a tenant and has a couple of agencies squabbling over who should manage the property. Last week we got a phone call from one of them to say that a bird had flown down the chimney and expired in the living room. “It's made a bit of a mess, “ they said. Sighing, Polly made her way to the house armed with some cleaning equipment to discover just how much mess a trapped magpie can make. It turns out that it makes a lot. She phoned me to say that the house looked like a scene from CSI Surrey. “What should I do with the. . . er. . . body?” she asked. I suggested she put it in a plastic bag. It was only on the way home that Polly realised the irony. She'd interred the magpie in a Sainbury's Bag for Life.

Until next time.

Spring Is Springing

I feel a little as though I am coming out of hibernation. As the weather improves and the temperature slowly climbs I have been able to get out a little more. My mother came to visit and Polly and I took her for lunch at the local garden centre (rock n roll, hey). Then at the weekend I went to collect Sam from a party and also chased the boys around the park on the their bikes. (This took a while because Sam can only ride in a straight line and crashes dramatically at the slightest curve.)

Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.

I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”

Until next time.

The Boy In The Bubble

On Wednesday I was finally admitted to the Royal Brompton Hospital in London for them to try and address the problems I've been having with my blood gasses and with the BiPap alarm going off umpteen times a night. I was poked and prodded by a doctor who also (on the second attempt) took blood and analysed it. My CO2 levels are too high and as a result my blood is turning acidic, which is not as cool as it sounds. Time to take action before I turn into a blood-burning super-villain.

I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.

The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.

When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.

Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.

Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.

Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.

Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.

In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.

When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.

I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.

Until next time. . .

In Limbo

Theoretically I'm off to the Brompton tomorrow but I won't hold my breath (they get really mad if you do that). I'll keep you informed of my progress or lack of it. Meanwhile I'm in a kind of limbo. Ho hum.

Bumped

Apologies for the lack of posts over the last week or so. What can I say? It's January. It's cold, grey and generally miserable. If there was any justice in the world I would be in Mauritius.

I am not, incidentally, in hospital. I was due to go in to the Royal Brompton on Tuesday so they could fiddle around with my BiPap settings and play with my mask in an attempt to sort out my CO2 levels. However I was bumped from my rightful bed by some sick person who was deemed to be in greater need than me. I was all psyched up and ready to go, ebooks downloaded and iPod charged, when the bed manager rang to say don't come.

Polly had to cancel her 'girls night' and we are both resigned to another couple of weeks of disturbed sleep with the BiPap alarm going off on average 17 times a night. It is worse for Polly because the high-pitched alarm doesn't always wake me but it does her. She has taken to kicking me in the back so we can share the experience. The sooner we can get it all sorted the sooner my bruises will heal.

I'll keep you updated.

Take It On The Chin Strap

Now the gods of medicine mock me.

On Tuesday I made my way, with Polly, to the Royal Brompton Hospital for a routine check-up. Once again I sat in a corridor and waited for people to take blood from my ear and perform arcane analysis of it. And then we waited some more. Eventually a doctor wandered down the corridor clutching a large folder of notes and summoned me to a consulting room. (Actually a corner of a ward.) He glanced at the slip of paper with the blood gas analysis on it and frowned. “Your CO2 levels are a little higher than we'd like,“ he said.

Because the alarm on the Nippy ST ventilator kept going off two or three hundred times a night we changed to the Harmony which is blissfully alarmless. Unfortunately the Harmony can not generate sufficient pressure to clear the build up of Carbon Dioxide in my body even when working at its highest settings. I need the raw power of the Nippy. The choice I am presented with is slow death by CO2 poisoning or a quick death from Polly when she cracks from the strain of lack of sleep due to the Nippy's alarm. Neither prospect appeals. The doctor decided that the best thing to do was to admit me for a few days in January and experiment with a range of machines and masks whilst I am being carefully monitored. Okay, but in the meantime...?

The Nippy's alarm goes off because the pressure drops when I enter deep sleep and my weakened facial muscles relax. The idiot machine thinks there is a leak in the system; which there is; me. The solution? Seal the leak. How? Use a chin strap. (Note to Blake – Okay clever clogs, you were right back in September.)

At this point the gods of medicine start to giggle. Using a BiPap ventilator mask already makes me look like an ill-prepared Scuba diver. Now, with the chin strap, I look like an ill-prepared Scuba diver with comedy toothache. Or worse, a Victorian corpse. The white strap wraps around my head making me look like Jacob Marley on his way to the Great Barrier Reef. If you struggled very very hard you would fail to come up with a less dignified look.

Until next time, if I survive the humiliation.

Still No Wheelchair

Okay, where were we? My super-duper new wheelchair is still AWOL. Obviously it was never going to be simple to fix what with it literally having more computing power than the Apollo 11 moon landing mission. Apparently the controller has a fault. I'm told it should be sorted sometime next week. If I had any breath I'd hold it.

Talking of breath – neat segue, hey? - I'm making progress with the lung infection again. I was doing very well but on Thursday took a few steps backward when my temperature went up again. Dr Toosy has switched me to Ciprofloxacin and given me some Budesonide nebulisers. The main problem is that the whole process is so exhausting. It's not been helped by having my comfy wheelchair whipped away. My posture is not so good in the old one and the base of my right lung gets compressed. On Friday the community physiotherapist came to beat me and shake me. If she wasn't so nice I could really go off her.

That's all for now. Until next time.

The Blue Box

I am feeling so much better that I am beginning to wonder what all all the fuss was about. My temperature is down to normal and the infection seems to have gone. There is some residual gunk and coughing but it is as nothing compared to last week. It will take another week or so before I'm back to what passes as normal for me but I can live with that.

I would certainly have ended up on a respiratory ward at St Helier or the Brompton Hospital had it not been for one particular piece of kit. At times of crisis our home can resemble a reasonably equipped emergency facility what a BiPap ventilator, a nebuliser, ceiling hoists, profiling bed, air mattress, Oxygen, a drugs cabinet with a significant street value, and a blue box the size of a large bread-bin, known in our home as 'the cough machine', but more technically, by my consultant at least, as a Cough Assist Mechanical Insufflator-Exsufflator.

The Cough Assist Mechanical Insufflator-Exsufflator is a genuinely life saving bit of tech. Without it I would either be dead or on permanent ventilation. The machine works by clearing secretions by gradually applying a positive pressure to the airways and then rapidly switching to negative pressure. Apparently the rapid shift in pressure produces a high expiratory flow, simulating a natural cough. The reality is more akin to having someone Dyson your lungs on full power. The effect is unsettling and uncomfortable but infinitely preferable to hours of ineffectual hacking coughs that simply exhaust you, or, sessions of chest pounding physiotherapy that induce near psychopathic hatred of the person pummelling you.

Way back in 2000 I was very ill with Pneumonia resulting as a complication from Pancreatitis. I was in intensive care and high dependency wards for months and for most of the time had a tracheotomy. A tracheotomy, for those unfamiliar with the procedure, is where someone, preferably a doctor, makes a hole in your neck and feeds a tube into your lungs for air to be drawn through, or, as in my case, for someone to stick a suction tube in and vacuum your lungs for gunk. Having a nervous F2 wielding a scalpel at your throat while you are passing out from lack of Oxygen rates pretty low on my list of things to do again. The advantage of the cough machine is that it is totally non-invasive. It removes secretions without the need for someone sticking a plastic straw through an unnatural orifice in your neck. I'm not sure how much such machines cost but they must be cheaper than spending days, weeks or months in hospital.

Even today, when I am feeling so much better, I have already used the blue machine twice. Once again I am grateful to be living in a country with a national health service that provides such equipment free at the point of need.

In the light of all above, it might seem churlish to moan about another freely provided piece of absolutely necessary kit, but this morning, just at a critical juncture in the preparation for a shower, my new multi-thousand pound, state-of-the-art, rinky-dink wheelchair stopped working. The control panel LCD screen simply states there is a system error and the thing refuses to budge. Fortunately, the ever unreliable Serco, have failed to collect my old wheelchair and so I am back in that until an engineer with a degree in computer science can get here tomorrow. I have had the new chair ten days, most of those I've been too ill to do anything other than sit, so I doubt the problem is overuse. Mind you, I wouldn't put it past Matty to have reprogrammed it to play Marvel Ultimate Alliance 2.

Until next time.

Poorly Puppy

As you can tell from the fact that I'm updating this blog, I'm still alive. I'm being very sensible, eating a little, drinking fluids, taking my medicine, having nebulisers and not attending arena based spectacles in the south-east of London. No sir, I'm a good boy.

I am, however, sick of being sick. I can't even lie back in my new whiz-bang wheelchair without drowning in self-produced fluids. Worse still, in many ways, I know I should be grateful that this is still a relatively minor illness by my standard, and I should be happy that I've not been carted off to hospital to be ventilated through a tracheotomy. Still, it's only September, and a long winter looms. Oh enough, Stephen.

Disconcertingly, my GP reads this blog, so, given my stupidity on Sunday, it was with some trepidation that I had Polly ring him to confess that the nasty green stuff in my lungs was, indeed, still nasty and still green, despite 5 days on Co-amoviclav and a course of Prednisolone. So, now, Dr T, having noted that according to Twitter, I was feeling a bit better, has forgone a switch to Ciprofloxacin but has upped the dose of Prednisolone. (He did phone to check I was actually improving – he doesn't just diagnose and prescribe based on Twitter tweets, he's a professional after all.) He's also ordered a sputum test. (I tell you all this because I know Jacq, Ronnie, and any other GPs reading this are itching to know.)

Polly went to the Chemist in the village to collect the prescription. It was not, she told me, our regular pharmacist, but another pretty young woman, who, having done the necessary identity checks, remarked, as she handed over the bag of drugs, that she had looked at my file on the pharmacy computer.

“Poor Mr Deal, ah, bless him,“ she said chirpily. “He has been a poorly puppy.” Sweet.

Polly says that in 16 years of marriage she's never thought of me as a puppy. Many other creatures however. . .

Until next time. Bye.

How To Be Sick And Stupid

Thursday evening: start to feel a bit rough.

Thursday night: Very hot, coughing.

Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.

Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.

Friday afternoon and evening: miserable.

Friday night: coughing, hot, sweaty, anxious.

Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.

Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.

Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.

Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.

More soon, assuming I live. Bye.

Unbalanced

Okay, where were we? Back from holiday, that's right. Back from holiday and straight in to a carer crisis. One of my long term carers suddenly started arriving late or not arriving at all. There were, of course, all sorts of reasons, some understandable and some not so. The result, anyway, was that I spent several days stuck in bed for an extra hour or so, or hanging around in the evening, ever shorter of breath, waiting for replacement carers to arrive. The situation has settled down somewhat but I'm still not sure who is going to turn up morning and night.

Further complicating the situation has been my BiPap mask problem. As mentioned last time, I appear to be leaking in deep sleep. The air pushed in to my lungs by the BiPap machine is under pressure and the mask I use is a nasal one. In other words, a mask fits to my nostrils and blasts air up them and in to the lungs, fully inflating them, and thus facilitating O2 and CO2 exchange. The system only works effectively because of the pressure. However, when I am in deep sleep, the muscles in my face relax and the pressurised air short cuts the lungs and escapes via my mouth. The BiPap machine has interpreted this as a leak in the system, it's little computerized brain assuming someone has stuck a pin in the tube or unplugged something in an attempt to assassinate me in my sleep. Although I don't actually die (you'll notice), the effect is, over the long term, a build up of CO2 and resulting headaches and mental sluggishness.

To solve this problem I have been sent, from the Royal Brompton Hospital, various alternative face masks. The first one covered both my nose and mouth, which obviously solved the mouth leaking problem, but was terribly hot and uncomfortable and turned any saliva in to dry, crispy flakes. It also leaked tiny amounts of air around the sides causing occasional high-pitched squeaking sounds. Horrible. The next mask was a full-faced one, covering eyes, nose and mouth. It looked suitable for deep-sea diving. I am not a naturally panicky person but the moment I put this mask on I felt unbearably claustrophobic. My eyes watered and my nose itched and I couldn't touch them because of this plastic casing. I managed nearly two minutes before freaking out and trying, unsuccessfully, to rip the thing from my face. Fortunately Polly came to my semi-hysterical rescue while the carers flapped ineffectually.

So, at the moment, I'm using my old mask with an alternative, non-alarming BiPap machine. Unfortunately this machine is less affective (due to its limited pressure settings) and although I am not being woken by an alarm I am, presumably, still leaking air in deep sleep. This is a situation that can't go on too long. If I start writing complete gibberish (as opposed to the normal nonsense), you can assume my gas levels are unbalanced and I'm being poisoned.

Until next time. . .