Just when you thought it was safe...

Even when you've got a lethal medical condition, it's still easy to take your health for granted. The meds do their job, and after a few months of having no ill-effects whatsoever, you've almost forgotten you're only alive because medicine makes it possible.

So it was last Sunday when the creeping nausea of what felt like a post wedding anniversary hangover kicked in. I'm not the drinker I used to be, so I wasn't entirely surprised by a bottle of champagne making me feel like Satan himself had kicked me in the guts.

Around 3pm though, it became apparent this was no mere hangover. I'll spare you as much detail as possible, suffice to say "violent explosions at both ends," is a phrase I could use. I assumed a once familiar position; fully clothed and under a duvet in 25 degree heat, teeth chattering violently. At this point my wife made the obligatory call to the 111 service. I've mentioned this before, but there is no way on this earth you can substitute a trained nurse for a call-handler with a checklist and not sacrifice quality. A skilled professional from any background will tell you the same thing, but in this age of austerity from above, why not consider the words of Red Adair -

"If you think it's expensive to hire a professional to do the job, wait until you hire an amateur."

If you can't be secure in the knowledge you've received the best advice possible, where else do you turn outside normal working hours? Increasingly, it's A&E, just to compound existing problems further. Suffice to say this type of blinkered cost cutting is the reason I fight.

So anyway, an hour after getting off the line with 111, I staggered to the toilet, beset by flashing lights in my vision. After throwing up, the greatest physical effort I could manage was to rest my head on the toilet seat.

Not long after that, my father in law arrived to provide the impromptu ambulance service he's kindly laid on for us many times before. By this point, I was in need of a wheelchair to get me from the drop-off point to the front desk (forty yards, tops).

I was through triage and in a cubicle inside about twenty minutes, shortly followed by the relief of an IV being fitted. I got fitful sleep throughout the night, and was moved to a ward at around 6.30am.

It didn't dawn on me when I was half asleep, but I ended up on SCDU (Surgical Clinical Decisions Unit), as opposed to my original destination of AMU (the Acute Medical Unit). I later got time to ask the nurse why this was; it turns out this really was a case of any port in a storm. I ended up where there was bed space available.

I came in just before a fractious phone conversation between one of the senior staff and what I later heard was a bed manager; the bed manager, on trying to shoehorn more patients into the ward, was told in no uncertain terms to start thinking of patient safety and not numbers. Suffice to say the NHS I love is the one where patient care is paramount, and you know the people in the trenches will fight for you when you can't fight for yourself.

That's the NHS I was reminded of as one of the nurses coming into shift took the time to introduce herself personally and walked me through the necessary paperwork. On arrival, she spoke with each of us new arrivals, confirmed she'd be one of the nurses looking after us for the day, and added the sense of calm and comfort that makes all the difference when you're at your most vulnerable.

A couple of hours later, after having three weeks' dose of meds intravenously, I was passed fit for discharge by the consultant during rounds, and for the second time in four years I stepped out into the car park having been nursed back from the brink.

At long last...

I had my six month check up with my endocrinologist recently.

It's always a pleasure, a regular reminder of being nursed back from the brink of death, of the everyday heroes working just a few miles from my house.

This time though, it was even better. In the three years since my Addison's diagnosis, we've gone through an ongoing process of reducing my dosage of steroids. At first, I was on 80mg of hydrocortisone per day, which we then cut to 40, and more recently down to 20.

For the uninitiated, the normal human body produces about 15 per day. As such, each stage of this process has represented a gradual movement towards normality, all under the careful guidance of my endocrinologist.  I'm pleased to confirm that on my last visit, for the first time in three years, my dose was held at the same level as it was previously - the level at which it will be set from now on. After three years of crisis, ballooning weight followed by two years of weight loss, and coming to terms with the fact that I'll have to consult a pharmacist before buying something as innocuous as cough syrup, I've reached what passes for normality in the world of the Addison's diseased man.

It's been a process through which my endocrinologist has guided me with charm and expertise...

Priceless.

I've got your back...

Just before Christmas, my youngest son (whose birth led me to create this blog) was taken ill with bronchiolitis.

In the early stages, it doesn't look that much different from a cold, so when my wife first took him to the doctor it was purely as a precaution, just to reassure ourselves that our son's snuffles weren't anything more serious. Unfortunately, they were, but throughout his illness, having NHS staff on hand to offer support and advice was, as always, invaluable.

It started with what I always suspected would come along - the first indication I've seen first hand that NHS reforms aren't improving the service. We called NHS Direct, only to be told that in our area, we now have to use the 111 service. There are few things more reassuring than a professional nurse. Their compassion and experience have always put me at ease in the past when calling NHS Direct. Sadly the person we got through to was not a nurse, but a call handler with a checklist to go through. In fairness, we got what we needed, an appointment at the hospital walk in centre, but something valuable has been lost in the search for reduced cost.

When she arrived at the hospital, my wife was seen immediately. There's nothing you can do about bronchiolitis, other than wait for the illness to run it's course; and it's a horrible illness. My little boy was breathing from his belly rather than his chest, and sleeping constantly as he wasn't getting the oxygen needed to stay awake. He stayed in the hospital for five hours in his own room for observation. During that time, staff checked in regularly, and on occasion stopped to chat to my wife to put her at ease.

After he was discharged, we were given the ward number to call 24/7 if his condition took a turn for the worse. With the health visitor also on the other end of the phone, help and advice were constantly at hand. Even though medical treatment wasn't possible, and we had to let his Iillness run its course. Several nervous days of watching our exhausted little boy struggle to breathe followed. This was made bearable by the knowledge that we could speak to a professional at any minute.

He's better now, putting weight back on and is a chunky chap. As ever, I just hope one day he'll be able to rely on the same support his mother and I took as our birthright.

Phases of the moon

It's that time of the month again. I'm sitting in the pharmacy awaiting my prescriptions; 20mg hydrocortisone, 0.1mcg fludrocortisone. For me these are quite literally the difference between life and death.

Love songs and the like are big on the idea of putting your life in the hands of another person. My life, by contrast, is in the hands of the organisation that provides my medication. You know that feeling you get when you lose your car keys? Imagine that dialled up to a million. That's pretty much me when I don't know where my pills are. My disease is invariably lethal if not medicated; knowing my pills will be always be available is the most profound comfort imaginable.

Know your enemy...

Times are a little hectic with me at the moment, so not finding much time to write. Plus, even I go through weeks of not using the NHS at a time.

Until my own next instalment, check out The X-Ray Factor's concise summary of the quarter-century long attack on our NHS...

http://thexrayfactor.wordpress.com/2013/11/30/how-to-dismantle-the-nhs-in-10-easy-steps/

This is why I fight...

Picked up my prescriptions again last week. Every time I visit the doctors now, I'm reminded of my most dramatic trip there, back in late 2010.

I'd been having bouts of illness for several months. Fatigue to the point where walking across the room was a challenge, frequent vomiting in the mornings, and endless feelings of dehydration. I was working from home at the time, and still managed to end up too ill to work for seven days during the year.

Then, in October, I was taken out of action for a whole week. I spent four days on the sofa, wrapped in a fleece and a blanket, shivering to my bones. On Wednesday, my wife dragged me to pester my GP again; they took blood tests and called me back on Friday. By Thursday night, it took me three attempts to walk up the stairs, and I was mumbling deliriously as I did so.

On Friday, they called me in to discuss my results. After months of suffering with this mystery illness, just to hear it given a name was a huge relief. That name was Addisons Disease. Invariably fatal at the time Dr Thomas Addison first discovered it, these days it's medicated with steroids and has no effect on quality of life or life-expectancy at all. I was in the midst of an Addisonian crisis, the stage of the disease that comes just prior to death by circulatory collapse. Pleasant, eh?

I was taken to the Medical Assessment Unit at the Royal. Given the state I was in when I got there, the nurses informed me that the Intensive Care Unit had been notified of my arrival. It's all of about sixty feet from the main doors of the Royal to the corridor off towards the MAU. Walking that distance was one of the most physically strenuous things I've ever done.

At the MAU, I was hooked up to a drip, given anti-vomiting drugs, injected with steroids and talked through the process by a medical staff whose bedside manner was invariably superb. At each stage, they let me know what they were doing and why they were doing it. From being on the brink of death on Friday morning, and having had half a Pot Noodle to eat all week (it's funny what you can get down when you're ill), by tea time I was in a fit state to eat, and enjoy, a whole meal. By Saturday morning, after a sleep in my own private room, I was ready for release. Walking through the lobby 24 hours earlier had been like climbing the north face of the Eiger. Leaving, I strode across it easily, and when I got to the car park did some Dick van Dyke heel clicks for my wife's amusement. It was the fittest I'd felt in years.

The staff of the NHS saved my life that day, and did it with smiles on their faces and decency radiating from them throughout. As I type this I still feel a profound sense of gratitude.

This, I think to myself, is why I fight.

It's just a little prick...

In other good NHS news, we got the results of our newborn's heel prick tests back.

For the uninitiated, that's a blood test with a spot taken from the heel to allow for screening of several nasty ailments, including sickle cell disease, cystic fibrosis, and congenital hypothyroidism.

I'm pleased to report an all clear on all counts. You can't buy peace of mind like that...