Thursday, 9 September 2010

Still waiting....

This is the worst bit, waiting to hear about the next surgery, the next procedure, whatever.  I think it's even worse when you don't hear anything.  it gives you no time to plan.

I keep applying for jobs.  I have a lot of experience, working for the good old NHS.  The trouble is, they don't seem to recognise that.  I gave up my last job as a result of the behaviour of my line manager.  She would berate me to my face for months on end.  When I finally complained, she actually sat there and lied to my face.  I wanted to hurt her.  I believe it's what they call constructive dismissal, she made it impossible for me to work there; she actively created a hostile work environment.  I know exactly why it was though; I was hired in her absence.  That's it.  Grown up, eh?  Anyway, back on point, this has created something of a void in my CV and I now cannot get hired for toffee.  Humph....

Tuesday, 24 August 2010

Russian Roulette

Tonight, I have taken more than my fair share of pain medications.  This should be fun.

I am just sick to death of being in pain.  My back, my pelvis, my hips, my knees are all stiff and won't move when I want them to.  My throat, obviously, is a source of great pain.

And mentally, I hurt at the moment.  I just think people don't realise how little stress I can really cope with.  I have days where I've had enough, and this is one of them. 

So I look forward to a nice long sleep.

I sometimes wonder what will be the first to go; my pain or my major organ functions. 

Morbid, innit?...

Maybe it will all be better in the morning.

Wednesday, 18 August 2010

Ow, my poor little brain hurts....

Ah, I'm having one of those days, so please forgive me, I'm  going to ramble again.  I have to say, i think another really horrible effect of this illness is one that people don't consider; the financial side of things.  Since my breathing degenerated, I've been unable to work.  I kept trying to find a job that would be accommodating of my medical needs, but unfortunately such a job does not exist.  I work mostly in hospitals, I am a good hospital administrator, and it frustrates the hell out of me that I can't work.  I want to work.  But want I don't want to go through is what happened before;  I would have to get up at 4am in order to spend 30 minutes getting bathed and ready, and a further 90 minutes on my nebuliser before I could leave the house.  At 6am, I would get the train.  I would sit on that thing for about 60 minutes, before it arrived at my destination.  My medications had an unfortunate side effect; they caused my 'bowels' to explode at some unpredicatable time during the morning.  If I could time this before I left the house, then no problem.  Or for when I got to work, again, no problem.  But nine times out of ten, the pain descended en route.  And I more than once had to jump off the train at Whitechapel, and heave my way up the stairs and over the road to the hospital, so that I could use their toilet, and then lay on the floor until the stomach cramps subsided.  I know, it's graphic, but this is the reality.

And then came the day I coughed the stent out.  The stent is a 1.8 by 8.0cm hollow silastic tube, which is normally held in my trachea by a stitch which passes through the trachea to the outside of the neck, where it fastens the stent in place.  But on this day, I was just about ready to get off the train.  As it pulled into Great Portland Street Station, the doors opened and I coughed.  As I coughed, I felt a horrible slippery sensation.  I knew instantly that the stent was out.  And it was lodged in my airway at an awkward angle, preventing me from either calling for help or breathing well.  Luckily, I went into shock straight away.  I fell forwards onto the platform; the force of this provoked another cough, at which point the stent slid out completely and landed in my open hand.  I really couldn't believe this was happening.  Even more unbelieveable was that, despite seeing what had happened to me, noone offered any help.  They left me there, gasping for air on the platform floor.  I knew at that point that I would die there, alone, cold and terrified.

My trachea will not support itself without the stent, it just slowly collapses in on itself, causing a fatal reduction in oxygen levels.  So with the stent out, I was in serious danger.  There was one chap, a New Zealander, who caught my eye.  He registered that something was wrong, and he said 'what's happened?'.  I showed him the stent and said 'this is my windpipe...'  he grasped the urgency of the situation, dropped his bags and ran for help.  he returned with the station manager and eventually, after much kerfuffle, I was taken to hospital at UCLH. 

Anyway, this episode left me with a bad case of PTSD.  I did try and return to work there, but it became increasingly difficult for me to make the journey.  I would not sleep for three days because I would get so stressed about revisiting the site of my near demise.  So I had to leave the most wonderful job I've ever had.  I miss it to this day.

And then there was the trauma of the return journey.  Usually after a days work I would be so dry that I would sit on the train literally gasping for air, and in terrible, terrible pain.  On more than one occasion I almost completely blocked up with sticky mucous.

So there you have it, tracheal stenosis has stripped me of my future, my present and now, as time goes by, a lot of my past.  It has affected my ability to care for myself, and provide for myself.  It has presented me with experiences that I just don't know how to begin to handle.  And the resulting lack of money restricts my ability to educate myself to overcome these challenges.  I just hate it.  I need something, and I need someone to help me.  please, just make it go away.  I've had enough being strong, I just want to be normal again.

The final thing it robbed me of; my sanity.  I cannot have a family either.  I also have developed arthritis in my spine, and this is causing it to degenerate at a rate of knotts.  I'd like to say I'm just having a bad night, but I would truly be lying.  I've been feeling like this for over two years now, and it's just getting worse.  I'm sick of waking up in the morning and wondering if today will be the day that I die?

I'm 30 years old, this is all just wrong.

Tuesday, 17 August 2010

Big stringy lumps of goo...

So today I will mostly be talking about big stringy lumps of goo.  Specifically, my stringy goo.

This is an unexpected complication of the TS.  After many years of suffering with constant chest and throat infections, I now have a condition known as bronchiectasis.  And I also have scarring on my lungs as a long term complication of a complication of glandular fever (Acute Respiratory Distress Syndrome).  Trying saying that sentence in one breath;  I can't, hehehe I can't even type it without getting breathless.

Anyway, back on point.  Both yesterday (and today) I've had moments of real panic.  I attempted to cough and clear my throat, a perfectly normal things to want to do, and instead of everything becoming clearer, everything got really, really clogged up.  I admit, between you and me, I panicked.  I did everything I was supposed to do; I sat on my nebuliser for an hour, putting through ampoule after ampoule of saline until it cleared.  But I hated every minute, and I resented every minute absolutely beyond belief.

It surprises me that even as the years go by, the psychological effects of this are no easier to deal with.  I am, to be honest, completely terrified of suffocating to death.  I have experienced respiratoy arrest more than once; it's painful, it's terrifying and, during those moments when the oxygen levels in your blood fall you are filled with certainty that you are going to die.  It's horrific.  I constantly suffer flashbacks and moments of pure panic.

So as you can probably understand, when things in my stent get a bit sticky, I get really stressed.  I wish I could be out doing anything, absolutely anything else, than sitting here on a nebuliser for five hours a day wondering if the next time I cough will be the time that my throat blocks up and I die.  That's the reality.  People see me and they don't realise that TS affords the sufferer a greatly reduced risk of living.  I don't have the luxury of knowing that I'm going to die, I have to consider that I might or might not.  I can not live the life I want, and i cannot prepare myself for death.  I live in a constant state of limbo and panic.  I keep telling myself that I have to keep living life,  because at the moment, I have no choice.  I have to hold onto the hope that my prayers will be answered, and the great GS will be able to pull of this transplant.  Hope is all I have now; I don't have a life anymore, that's for sure.

The good news is, my friend who was having the op came through it alive.  She's struggling a bit with the post op effects (lets face it, who wouldn't), but she is strong, and she has a great sense of humour.  That'll get her through.  She hates the TS as much as I do.  You have to hate it; if you don't fight it all the way, it will win.

She's even finding the time to give me some help dealing with my chest problem.  How nice is that?  Doctors have a go, but there is only so much they can do.  People who have been there and done it, however, can give you the honest inside track on how effective each treatment was, and the relative advantages and disadvantages.

I hate TS but I love life.  I have a lot to give back.  Maybe one day, I'll be able to live it again :o)

Hope springs eternal.  Without hope there is no light.  Without light, there is only darkness.  With darkness, come bruises.  You bump into things a lot.

I really shouldn't try and write sensible passages when I've taken my painkiller, lol, it just comes out as pure chain of thought.  Oh well, welcome to my mind everybody!!

Hope you all have a lovely sleep.  Good breathing, people!

Saturday, 14 August 2010

Today is a strange day...

Why is it that stents always begin to play up when you're doing something good?  Like about to go out for dinner, or just settling down to watch something cool on TV?  I've been sat here for an hour now trying to cough sticky secretions out of my airway.  It's like giving birth, so I'm led to believe.  You get it to the point where you think it's going to come out and you're ready for the last push and then the bugger ends up sliding back down again.  And so the whole pushing process begins again.

It's almost as if they know what you're thinking....

Friday, 13 August 2010


I just found out the long term odds of survival.  This is not looking good...

The air that you breathe...

Do you think that air quality makes a difference to TS sufferers?  You'd think the obvious answer is yes.  Yet I still meet people to this day who see my scars, they hear my coughing and wheezing and they still think it's okay to blow cigarette smoke in my face.  Quite often, you can't get through a doorway without having to first wade through a crowd of people who are happily destroying their own lungs and can't seem to resist destroying mine.  I'm not anti smoking, I don't subscribe to that bandwagon.  But I am pro breathing, so if the smoking interferes with my breathing, I get annoyed.

Even when I go to hospital now, this happens.  I go to a specialist hospital (The Royal National Throat Nose and Ear Hospital) in London.  They deal with a lot of really serious airway disease.  And you still see people outside, smoking.

My local hospital is the same.  I've actually witnessed people in PJs being wheeled outside in chairs, attached to oxygen.  They then disconnect their supply and spark up.  Now what is THAT all about?!!  There was, in fact, such a demand for smoking space (the hospital until recently operated a no smoking policy on site), that the health authority spent something like £60 000 on a smoking shelter.  Now if you ignore the arguments for and against people being allowed to smoke anyway, you should ask yourself what exactly all this money paid for?  It's basically a bus shelter and a dustbin.  What on Earth cost £60 000 out of that?  What's the bin made out of, gold?!

And while they're doing that, they're actually claiming that they don't have enough money to operate clinics and some theatres.  They cancel appointments for surgery regularly, and it isn't unusual to get three, maybe four cancelled dates before you actually get your operation.  This has happened to my brother, my mum, and also to me.  I see the pain specialist there, and despite my 'urgent' referral, I still had to wait two years for an appointment, and a further eight months for any treatment.  How long would they have made me wait if it wasn't urgent?  But I'm going off point here.  What I'm getting at, is that people in charge have their priorities wrong.  They would sooner allocate a huge amount of money for a plastic smoking shelter, than they would use the money to run more clinics or theatres.  Ridiculous.

I heard about this happening at a mental health trust in London.  They cover the smallest area of any mental health trust in England, yet they have one of the longest waiting lists (from what I understand, anyway).  There are a lot of people in real distress there who desperately need help.  Now, rather than spend some money recruiting and training more specialist mental health practitioners, this trust decided to rebrand themselves, for about the third time in five years.  Skewed priorities in action, yet again.

The only way that things like this will stop happening, is if people like you (and me) take the time to get involved in making the policy and decisions.  We need to have an input into out public health system.  There's no point moaning about it if we can't be bothered to make our views known.  I belong to two hospital trusts, and I have my input by answering the questionnaires they send me, and expressing my views.  I go to open days, when invited, and I meet and question the people in charge.  Sometimes, I go a little too far, but if you don't push the boundaries occasionally, then nothing changes.

On a lighter note, how many songs can you think of that mention air, oxygen and breathing?  So far I have:
1.  Harder to breathe (Maroon 5)
2.  The Air That You Breathe (Population 1/Nuno Bettencourt)
3.  Breathe (Kylie Minogue)
4.  Every Breath You Take (Police)

I'm trying to get to 100, lol...  Can you tell I'm bored?

Grrr.... GPs have too many holidays!

So, I have this wonderful GP.  He's amazing; very informed about the latest treatments, always willing to make time to listen and deal with medical problems that arise.  The trouble is he has one Rottweiler of a receptionist and she will not tell me when the next available appointment is.  I swear on my life that she thinks I'm stalking the poor chap.  As far as I'm aware, however, erotomania is not one of my many complaints!  Don't get me wrong, I actually really like him, but I think that's more to do with the hideously dark sense of humour than the tall dark handsome thing (which, without being mean, he isn't (taller than me)).  Imagine having your neck abcess lanced by a crazed looking, knife wielding, slightly sweaty chap, who keeps telling you to 'stop jumping around like a baby!!'  My Gosh, he doesn't even believe in local anaesthetic :)  I think I must have a masochistic streak.

Which reminds me, I've just seen two of the world's best number plates; M450 XSM and L600 NIE  Sums me up really, masochistic loonie!!!

Dripping with sweat (yuk...)

Aha, so methinks I might have a throat infection.  And I thought I'd escaped germ free, lol, I should have know better :0/   It started this morning, I felt a bit of a hot flush come on.  Then it happened again.  And again.  As I'm not in my forties and menopausal, it's got to be another filthy lurgy.  They sent me home with antibiotics, but OMG they're orange and grey capsules which reek of bleach.  How do I know that some benevolent 'Angel of Mercy' isn't trying to cleanse my soul from the inside out?  haha..  Paranoia isn't paranoia if they really are out to get you!! 

Today I find myself in the position where I have to apply for work because my finances are now critical.  Chronic illness is not good for the bank balance.  Although the principle of receiving state benefit of £96 per week seems like a good one, when you compare it to the £350 per week that I was earning, I'm running at something of a loss.  And for the record I do not receive Housing Benefit or Council Tax Benefit.  So I lose £70 of the £96 to rent.  Ouch.  £26 a week doesn't go terribly far these days.  Deduct money for gas and electricity and there's almost nothing left.  This is why people can't afford to go back to work, they don't have a chance to save anything to carry them through the initial wage free period.  It bugs me and it's a system which needs to change. If you're on JSA, you can get this continued for four weeks when you go back to work.  If you're on ESA, this doesn't apply.  So why are they moaning about the sick and disabled, and not giving us the same level of support as the well and able bodied?!!!  Rant, haha...

On a more mellow note, I'm sat here listening to Daughtry's album, Leave This Town.  Excellent tunes, my friends, you should give them a go.

Nebuliser, nebuliser...

Here I am again.  Hooked up to my nebuliser trying to clear my stent.  It's 10 30 am and this is the second time already today.  I was trying to work out how much time the average tracheal stenosis patient must spend on one of these things.  If they're anything like me, it's at least four hours a day.  Sometimes five.  Over a week it's 28 to 35 hours.  OMG, over a month that works out to just under a week.  12 weeks a year on a nebuliser!! 

Okay, so my maths are at the higher end of exaggerated but you get the point.  This is one boring illness, lol.  What I wouldn't give for a decent portable nebuliser.  Freedom!!

Thursday, 12 August 2010

Spare a thought...

I was just thinking about a new friend of mine who also has tracheal stenosis.  She's in hospital at the moment having a laryngo tracheal reconstruction, which will hopefully provide her with a new lease of life.  If good thoughts and wishes could cure someone, she's certainly in with a chance.  She was admitted to hospital on Monday, bizarrely to the same ward that I was on.  I didn't want to interfere, so I let her settle in and just gather her thoughts for the day ahead.  I shouldn't worry, but somehow I still do.  It's always harder watching people you like go through things which you know are painful.  But she is a fighter, and I know for sure she'll get through this.  It's her time to get cured, and I have everything crossed that she has a swift and uneventful recovery.  She's had more than enough rubbish to deal with, it's time things got easier for her.

The wonderful staff at the Royal National Throat Nose and Ear Hospital totally deserve a mention here.  Mr Guri Sandhu and of course the lovely Professor Howard (even though he abandoned me, sob!).  A special thanks goes out to B Ward, where the team is headed up by the lovely Sister O'Mahoney.  She'd kill me for writing that, lol.  I've spent more time there than I have at home over the last few years and without the support of all these people, I would have gone stark raving nuts.  Actually, I did go nuts, but that's one for another day :o)

Sorry for the sober tone, I have my occasional thoughful moments :o/

Fast Forward...

So now, almost exactly 13 years later, I've been there, done that, got the scar tissue...  I had the laser surgery.  I had the stents.  I had the tracheostomies, hard and soft.  I had the permanent stoma.  I had the permanent stoma reversal.  I had more laser surgery.  I had more stents.  They blocked, they failed, they got infected, and (on one especially delightful occassion) they came out.  8cm long that thing was, believe me it was a bitch to cough out, lol.  And I won't even get into the realm of respiratory arrests.  The crash trolley doesn't exist only on Casualty, I found this out the hard way, ha!

And now, they say, I need a transplant.  Isn't that just scary as Hell?  I keep getting told I'm at the top of the list, it'll happen soon, but a few days ago a junior doctor let slip that it might actually be more like three years.  A year, I can do;  three years, I can't.

I can barely do anything for myself anymore, as the breathing prevents me.  Without oxygen, there's nothing.

How it all began (part 1)

So, it occurred to me today that it would be wonderful to have a place to vent and share the experiences common to all of us with this hideous 'problem'.  For those of you who don't know me, I developed tracheal stenosis (a narrowing in my airway) about thirteen years ago, after having probably the most stupidly serious case of glandular fever ever.  It was ridiculous, one minute they were telling me I had the 'kissing disease' (ha!), and the next I was waking up in Intensive Care, paralysed from the waste down and unable to breathe, bright yellow from the liver problems, and hallucinating away.  Fun, eh?  Glandular fever doesn't do this, people told me.  Um, yes it does!

So when I woke up, I had a tracheostomy.  A couple of weeks later, they removed said tracheostomy.  I couldn't breathe.  They kept telling me it was the pneumonia, the pulmonary oedema, all the other stuff.  But I lay there day in day out with it getting harder and harder to breathe.  And it got scary.  My oxygen levels settled in the low 80s, I was constantly dizzy and sick, and I couldn't breathe well enough to eat or drink.  Imagine that!!  I'm a fat, greedy little sod usually, so it really was an unusual situation.

They transferred me to a chest ward.  I was surrounded by OAPs dying from lung cancer.  This wasn't exactly as inspiring experience.  The emininent Dr Doolittle (as he did very little) decided to send me home after two weeks.  Despite me still not being able to breathe. 

So I went home.  And just a few hours later, things got very difficult.  I could barely breathe at all.  It was insane.  I tried to stand up.  I couldn't.  I ended up crawling to the stairs and throwing myself down them.  The doctor was called, I was sent back to hospital.  The ENT team came to check me out, and the registrar decided that i must have a blocked airway.  He had a look down and couldn't see anything, so he decided to take me to theatre.  I remember the phone call, he actually pulled rank over someone who was about to have surgery for a nose job!  Aren't I glad he did?!!  They found, when they looked down further, that I had an almost total stenosis, basically, scar tissue had blocked all but the tiniest section of my airway.  When I say tiny, I mean tiny; it was less than 1mm wide.  Imagine breathing through the eye of a needle and you're halfway there.

I woke up with a tracheostomy.  I wasn't so worried about it at the time, all I thought was thank God, I can breathe!  They took me to HDU, and gave me a good dose of sub lingual ketamine, I think.  Fun!  I also had codeine injections, also terrific fun.  And I carried on breathing.  Then the ENT doctor ruined it; he told me that not only would I always have a tracheostomy, I would never ever speak again.  If no air goes through your trachea, no air goes through your vocal cords.  That was a blow.

So cue the massive depression.  Ignore the fact that I was living with the world's most selfish relatives (who the hell takes someone a present in hospital and then charges them for it?!), I was only just 18 and I'd had such massive plans for my life.  And here I was faced with the news that I would never be 'normal'.  I confess, I didn't cope well.