Cancellations, the Domino effect...

BBC News: How operating theatres are wasting two hours a day

In the last three years this has been an all too familiar occurrence for me, especially in anticipation of my last op, where the last time someone cancelled on me that many times was back in the early noughties when I had just got on the dating scene... We're happily married now but that's another story.

I've been called three days prior to my op with many apologies. I've been sat in Frankie and Bennies stuffing my face with what I thought was my final meal for a good while when I've received the call. And I've been gowned up, sat in a hospital bed, three hours past my scheduled time only to be told that the procedure would be unable to go ahead that day.

It's never the surgeons fault, they're overly apologetic, almost to the point of begging for forgiveness. I suppose they anticpiate that some people will take it a little harder than others, perhaps picking up the hospital bed and launching it through the window or even worse, putting in a written complaint to the hospital board.

But whilst I've been sat on one side of the scale, I've also weighed down the other. My last op I was stuck in Intensive Care two days longer than I should have been. They wanted to shift me to the High Dependancy Unit but couldn't because they were waiting to shift someone from there to the ward and the patient on the ward couldn't be moved because they were waiting for a bed to become available at another hospital, where they were waiting for another patient to depart... Still following? Me neither.

Finally though I got moved to HDU where again I spent two days longer there than I should have. My collapsed lung was causing all kinds of nonsense and the only way to get it back to working capacity was to take a little trek every now and then, which was no easy feat with a drip, oxygen cylinder and six lead mobile frequency transmitter in tow. Just taking just a short walk was a challenge in itself, since being in HDU every time I got out of bed on my own accord half the ward would gasp in disbelief, with the other half wondering what the fuck I was doing and shoo me urgently back under the covers. If by some miracle I made it past security... I mean the nurses station, the hospital would go on full lock down, with every available nurse, doctor, anaesthetist, phlebotomist, dental hygienist and Jim from bed seven in hot pursuit.

Needless to say having space and freedom was a necessity in a quick recovery. You can imagine my sheer adulation as a nurse shook me awake at 3.30 in the morning, telling me they needed the bed and I had to pack up my shit and vacate the ward immediately. They'd had an emergency and was having someone come up from A&E to ICU, so had to move someone from ICU to my bed in HDU, then move me to the ward, where the person in the ward was probably kicked out into the dark, cold streets or booked in to the nearest Premier Inn with full continental breakfast and extra chocolates on the pillows under the hospitals personal cheque book. (This is not an exaggeration as I have indeed spent many a night in a Premier Inn courtesy of the Bristol Royal Infirmity)

Its just one big game of dominoes, you just hope all the pieces fall down...

Do you have ID?... Because you look about 12

  Now, I'm not usually one to moan about being asked for ID, in fact I carry my drivers licence everywhere so I never have to risk it.  But that is for alcohol, where it is now widely followed that if you look under 25 you'll be requested to produce a form of respectful identification.
  However, I have never, I don't think EVER! been asked for ID for...... wait for it........ Lottery!

 
 So the story goes...
 
  It was a warm afternoon, as all the CHILDREN were in school, the sun was high in the sky letting off an unusual heat for an Octobers afternoon.  A slight breeze brushed past my face as I exited my vehicle, which you have to be at least 17 to drive....  

  I made my way through the foyer of the supermarket, giving the security guard a generous smile, I approached the lottery stand and filled in the forms for the evenings draw allowing myself to pass a thought on what I would spend my winnings on, perhaps an 25-30's cruise holiday?  Sniggering to myself thinking my wife would go nuts if I decided to pack my bags and head for the sea.
    Making my way over to the counter which was manned by a lady, a rather old lady, sorry, very old lady.  She had a warming a smile, a smile I would soon wish to slap off her wrinkly old face. To feel her coarse, harshly rough skin against the softness on the back of my young delicate hand.

'Hi' she said, barely breaking her coat hanger smile as I went to hand her the tickets. 

She followed with 'Do you have any ID?'


 I was immediately taken aback, overwhelmed with confusion and agreed with myself that due to my partial deafness I MUST have misheard

'Sorry?' I said

'Do you have any ID' She replied, her jaw and lips still glued in position, her false teeth sparkling under the brightness of the counter lights.

My smile turned to anguish, what is happening? I thought to myself, confused of the event that was beginning to unfold.  I am 27 years old... am I not? Now starting to question my age, my life flashed through my mind... 



My 18th birthday party, dancing, laughter, I broke my mothers leg...

My friends 21st birthday, drink, drink, stomach pumped...

My son being born March 22nd 2005, cradling him in my arms, tears of joy...

My wedding earlier this year, our first dance, eating chicken and cake in the room....




I managed to catch a glance in a mirror, yes I was still 27, my rugged good looks and defining facial features still held strong.
Fear gripped me, my eyes danced around to see if anyone had witnessed this horror.  No, thankfully.


 I held back temptation to question why I would be holding a set of car keys in my hand and that if she felt I was a mere 15 years old then her witnessing me driving off  it would be her duty to alert the police of Grand Theft Auto, then the police could arrest and caution her for wasting police time and I could laugh at her stupidness.
  My ID was 60 miles in another county, I had nothing to back up claim.  'Never mind' my voice stuttered before I turned and fled.  


 Sitting in the car I was overcome by mixed emotions, gripped with rage yet filled with despair.  I gathered my thoughts trying to put the event behind me and I hit the road, I didn't know where I was going or how long it would take me to get there, but one thing I did know...


I would not let some old, power mad woman destroy my life and deny me my ticket. 

Diary of a Dextrocardia(n)

As my blog is titled Diary of a Dextrocardia(n) it might be a good idea for me to include some actual stories lifted right out of my journal.
So I have scoured my notepads (picked up the first one I could find) and gruelingly read page after page (opened book and picked random entry).


The Date: unknown, I'd say two years ago
Destination of Entrant: Local Hospital bed
Reason for Hospitalization: Probably the usual chest pain....


It's 7.30 am, there's a patient alarm going off, nurses are hollering back and forth and Santa in the bed opposite me is having his nappy changed, good morning world. I'm just finishing off my breakfast and the cleaners are in, they make they're way over and are now shooing me off the bed. I attempt to wave my unfinished peace of toast in they're face but are having none of it, I concede defeat and move onto the adjacent chair.
Looking out the window I notice some old hag staring at me from the outpatients department, our eyes meet, I'm gonna stare this nosey bitch to the ground 1..2..3...4... I win! It's a hollow victory though, she's going home... I'm not. Her husband has now turned his attention to me, they're damn tag teaming me! I refuse to succumb to such childishness... I smile, I wave, give the finger and close the curtains.

My bed is done, at least I think it is? It looks exactly the same and the covers don't seem to be the Thomas the Tank ones I requested.

I move back onto the bed, my DS still hasn't charged, the TV is stuck on S4C and I've read all my magazines... Great.
Oh wait, Morristons Wife Beater has just appeared in his doorway, probably to see why no ones answering the alarm, either that or he thinks 'rounds out'
Finally a nurse has answered the bell, I hope it wasn't fatal.
Morristons Wife Beater wipes something on his vest and disappears back into his room... That was close.

I'm bored, really bored. I decide to re-re-re-read one of my magazines, I lie back and try ignore all the sounds and goings on and escape into my mag.

'Rhodri' Someone calls

'Rhodri'

'Rhodri'

I lower my magazine to see what is going on to see the guy in the opposite bed calling over in my direction 'Rhodri'

He's pretty much shouting now... 'RHODRI!'

I raise my mag, Rhodri's not my name, even it was I still wouldn't answer ('Rhodri!') He probably only wants to go to the toilet...

'RHODRI!!!'

I put down my magazine to find him at the end of my bed leaning towards me, I'd better see what he wants...
'Left out the door' I tell him.

He thanks me, heads for the door and turns right... this should be fun, wheres my popcorn. I should buzz a nurse really but unfortunately I'm all for the thrill of the chase. He's barely passed the window before a nurse is apprehending him. It's over in seconds, damn.

'Where are you going love?' she enquires as she begins to lead him back to his bed

'I need the toilet'

'There's a bottle by your bed' she tells him

'This won't fit in the bottle' he replies

Nice.

My love for Demolition Man

One of the thing's my wife hates about me is my obsession of the film Demolition Man

Starring

Sylvester Stallone, Sandra Bullock and Wesley Snipes

It's not the film itself she hates, in fact she's never even seen it. Her hatred comes from the fact that its been sitting on our Sky+ box taking up space for the last 5 years... even when I have a copy on DVD.

My love for the film though doesn't come from Stallone's cheesy lines, Bullocks bad acting or even Snipe's love for guns and verbal assaults. No, the obsession is built around a memory, it represents a moment of happiness, a release during an difficult time.

When I was about 13 I had to have my tonsils out, not a big or complicated procedure... for the normal person, but due to my heart complications and the medication I take one of the problems which always arise is bleeding.  I bleed, a lot. Taking a medication called Warfarin (a lot of people will probably be aware of this drug as its widely used to treat numerous cases and is frequently used with older patients.)
 #FUN FACT its also used in rat poison
Warfarin is used to stable the blood at a sufficient level to avoid clotting and hemorrhaging, with blood tests taken regularly to control it and haematologists advise the correct dose as levels tend to rise and fall.

Bristol Childrens hopsital - Where I had my tonsils removed

This meant that I bled, heavily and when the inside of your throat has had parts cut out and didn't clot over very well, every time I was sick it was not nice.

*warning next content can be unsettling
It was nothing but blood and lots of it, even through my nose. The first time it happened it scared the crap out of me as I was not expecting it.*

So this went on for a couple of days, and near the end of it I had had enough, I was sick of it literally as well as physically. I turned on the TV and up next was Demolition Man and for that hour and a half I was happy, being 13 I loved the film... guns, violence, naughty words, cheesy lines... this film was awesome. It took my mind off everything, I was no longer thinking when was I going to be sick or if I'd get to sleep that night, I didn't care.

So when my wife asks me...

'Can I delete this off the Sky+ planner?'

Yeah why not, delete away part of my life.

There are some moments in life we will leave behind forever, then there are others we will carry with us through to our parting days.

  There are two things I remember from this time, the first was being constantly sick, scared and wondering if it would ever end. The second was this film and the peace it brought.  Everything else is a blur, something that will fade even more in time.



So in the words of John Spartan:

'Enough! This isn't the Wild West. The Wild West wasn't even the Wild West. Hurting people's not a good thing! Well, sometimes it is, but not when it's a bunch of people looking for something to eat!'



That's right, it made absolute no sense to this post... but I felt it was relevant... Thank you for reading.

Imagination... Lego comes alive

This entry may seem completely irrelevant to what my blog is about, but it's not. My blog is a diary, past and present, of a Dextrocardia(n). And sometimes even a Dextrocardia(n) likes to open up the gates to the world of fantasy and let the imagination go on it's own little journey...




Having two weeks and the weather not being the best I decided to make my own adventure... in my garden.

Take some Lego men, a dinosaur, some wood and delve deep in the undergrowth of the back of beyond...

A Hunters Pride 

[Part 1]

The world awaits for these two hunters

Unaware of the dangers that lurk amongst the tall grass, they slowly make they're way through  the forest

 

 

Escape through the bushes is his only chance, unfortunately his companion was not so lucky

 

 

 

 

 

 

 

Escaping one torment draws him into another, clasped up against a wall in the hope that he can evade the preying eyes

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And...

That's as far as I got before a shower came.  I could have done some more with the rain providing some excellent waterfall effects, however I don't think my camera would have appreciated it as much as I would have.

Stay tuned for Part 2

'I can clearly hear a mumur...'

'Can you tell what it is yet?'

My Doctor would ask in his best Rolf Harris voice to the young Junior Doctors all huddled around me prodding, poking requesting deep breathes in... and out, in... and out

Due to my obvious rare condition I find myself quite often thrown at the mercy of young aspiring Doctors. Like a sheep to the wolves, I'm used to test someones ability, even in the world of medicine my condition is not always widely recognised and I must offer a little help along the way.


When having any procedure done unless its with my own Doctor who is fully aware of internal structure I almost always open with the line 'I'm Dextrocardic'. Not every time though, sometimes I like to have little fun, mix it up, break the cycle to test one's ability....

I was once lying in casualty having been brought in with chest pain and difficulty breathing having only returned home a few days earlier from a catheter procedure to insert a plug into one of my leaking valves.

The Cardiac Nurse was doing some tests and as I didn't really want to be hanging about the cold DAZ inspired white room I had been left in (and would be destined to stay for a further 5 hours) I thought I'd help hurry things along. As she was hooking me up for an E.C.G. I opened with the line that usually gets a few raised eyebrows from the nurses...

'I'm Dextrocardic'

'I know dear, I wouldn't be much of a Cardiac Nurse if I didn't know that'
she said with a laugh.... as she continued to hook me up the wrong way.

After seeing the readout she realized her mistake, but we all saw it, there was no denying of what just happened.


As I started saying, I'm used to Junior Doctors all huddling around me, wooing and ahhhing. Like NASA Scientists would if a Spaceship crash landed and they managed to pull an alien from the wreck and have it do little tests for them as they realise of this amazing discovery.

Most Doctors click quite quickly, others not so quick and some are willing to throw in the towel and decide I'm somehow dead.

I recall one up and comer attempting to give me a go...

'I can clearly hear some kind of murmur, possibly.... (makes assumption of words I can't possibly remember)'


I'd like to think that this is how my Doctor wanted to reply...

'No, you complete idiot, what the hell are you listening to? There is nothing there, you are on the wrong side of his chest... Surely you can tell that the beats of the heart would be too weak for this guy to be even breathing, if he went into cardiac arrest now with just you here he would be dead, you would be zapping emptiness with the paddles, in fact you would probably shock his heart out the side of his chest... You want to be a Doctor? Then take a look at an image of the bodies internal organs, see where the heart is positioned? Yes, you should be able to hear a nice clear heartbeat not a murmur, not a stomach rumbling, not wind... Now get back down to your mothers basement before I shove your stethoscope...'

I would have enjoyed that, but unfortunately the reply was usually a 10 minute speech using words I cannot pronounce apart from 'heart' and 'wrong side'.

 

 

 

Although by my post it may not seem like it but I like working with Junior Doctors. When they study me I enjoy the excitement a lot of them get from attempting to diagnose me. It also gives them first hand experience of a rare condition which benefits the patients they work with in the future who have such condition.

Myself: At an age when I was a little less sympathetic to the doctors prodding and poking me so they could attempt to give they're diagnostic

Sorry, I cant hear you... I'm deaf

'Can you put the bins out?' My wife will ask

'What's run out?' Will come my reply

You see, along with the major heart defects, and internal organ reversal I do carry other less serious complications.

One being I'm deaf in one ear. This was a result from a shunt operation which I had when I was about two years old. Although it was always denied by the Hospital that it was during the operation that it occurred. After having the operation it was apparent that a nerve had been severed which caused my left hand side of my face to seize up... it was after this operation that my parents became aware of my deafness although it had been claimed I could have been deaf since birth.

The left half of my face is seized from where a nerve had possibly been accidentally been severed.

'Why don't you sue? You'd probably get a good couple of grand' This is a regular question I am asked and and it annoys me every time. The answer is quite simple...

Why would I take the Hospital, Doctors and Nurses who saved my life to court? I could never stand in front of these people and start throwing blame, trying to claim money off they're backs, when the fact is if they hadn't been doing the procedure in the first place I wouldn't been here today. The only thing I'd say to them is Thank You.

'If your deaf in one year why do you wear both earplugs for your iPod?'

A lot of people don't actually seem to believe that I am deaf, they think I'm winding them up and the above question I get asked quite often. And again, the answer is simple...

If I'm walking down the road or through a shopping centre and someone I happen to know sees me there's a good chance they will say hi or call after me, then if I walk straight past them ignoring them with only having one earplug in they will probably think 'What an ignorant git'. So I always wear both plugs as not offend anyone or seem rude. I learnt this from experience, it's probably why a lot of people don't talk to me anymore.

I also wear have them in when I go into phone shops, that way when the hyenas pounce at me trying to flog the latest Apple phone, Orange broadband or Banana fax machine, I can completely ignore them. I don't want your new phone, I like my phone, it's an iPhone... That my friend is a brick, a useless prick and yes, it offends me.

#Benefit of being deaf in one ear:

Trying to catch some shut eye with 2 kids shouting, screaming and bouncing around the house like its a giant trampoline... I just turn over, rest my good ear on the pillow and... silence... yawn.

Not all Doom and Gloom

While the majority content of this blog will come across as 'Jeez, this guys life is pretty crappie... he spends half the time in hospital' I do try to put a humorous spin on things, if mostly for my own benefit than anything else.
I would like to take this time to talk about two good... sorry, amazing things in my life... and that would be my two children...



Many years ago sometime in my late teens a conversation came up with my doctor, at the time it just sort of went over my head but I was unaware of how strongly it would of impacted my life
A question arose on my *cough* sexual health and whether I had any problems erm, performing so to speak... my response was an immediate no as to shuffle along the conversation. But while we were on the subject he began to elaborate and explained that due to my condition (Congenital Heart Disease) There is a very high risk that I would be unable to have children.



As I said at the time I was in my teens and this just went over my head as having children was the last thing on my mind...



8 Years ago I met a girl, someone who I adored and fell in love with. I had discussed my health problems with and the conversation arose that I may not be able to have children. At the time it was very early in our relationship and wasn't the top priority in our lives at the time.

But then, Miracles can happen...

Less than a year into our relationship my girlfriend fell pregnant, by accident... It was a shock... a big shock...



I remember telling my father and his reaction was that of that I had just robbed a bank



'Whhhaaaatttt!!????'

My Mother pretty much 'dropped her chips'

My Grandmother almost strangled my girlfriend to death in a congratulation hug.



A few months later I visited my Cardiologist, he could see my girlfriend was a few months pregnant and explained that I was very lucky and very few people with my circumstances were gifted with such joy.



My son is now 6 years old, has no heart problem and leads a healthy life... I couldn't wish for more


The Genetic Jackhammer strikes again...



Again, accidents happen, am I complaining? No. January 2009 My beautiful daughter Aimee is born. No heart problems, healthy and happy..


All my life people, statistics, doctors have told me of thing's that will never happen

'He won't last the night'

'He won't live to his teens'

'It's unlikely he will live a normal life'



'You are unlikely to be able to have children'



The above obstacles haven't been overcome by myself alone, I have doctors, nurses, medical development to help me reach this day today, all of which I am exceptionally thankful for each day.



The biggest of which are the birth's of my children
Myself and my wife are exceptionally gifted people to have two beautiful children (As is every parent) But the fact that again, the odds were told to be against me and I can sit here with my two ruffians, who just cannot sit still, cannot stop moaning and whinge and nag nag nagggggg....



As I reflect on my life, the hospital visits, the never ending blood tests and tablet taking, the pain I went through, the operations I survived... For these two? It was worth it

An introduction...

Me? I’m just an ordinary guy in his mid twenties. On the outside I’m the just like you, on the inside however…





‘Dextrocardia is a congenital defect in which the heart is situated on the right side of the body. There are two main types of dextrocardia, dextrocardia of embryonic arrest (also known as isolated dextrocardia) and dextrocardia situs inversus’





Dextrocardia situs inversus is the condition which I was born with, it refers to the heart being a mirror image situated on the right side. My other major internal organs are also opposite.
1 in 12,000 people are affected by Dextrocardia, while 1 in 3 of these will have situs inversus.

Now with the technical details out the (albeit kept to a minimum) I can now explain what my blog will hold. Obviously with such a complicated medical condition life rarely runs smoothly and it is here I intend to detail my life’s past, present and future adventures…
Sometimes I may be serious, while mostly I’ll probably be making a joke of certain situations, for many years this has been my way of coping with things.

I hope maybe I get a few followers, some like me wanting to see another member of Cardiac heart clubs perspective, while others who are just here to join me for the journey….