Another day, another hospital appointment

Today I had an appointment with mny care coordinator Norman.  I arrived at the hospital, and took my place in the waiting room.  My psychiatrist walked past and said a very friendly hello, but I just felt too glum to do anything other than smile and wave.  I like my psychiatrists, he's a nice warm chap. Norman was in a meeting, but when he eventually arrived for our appointment, we went into a little room off the side corridor.  Irnocially, it was my psychiatrist's room. I got to sit in his chair, which turned out to be very uncomfortable, lol.  Poor old Francis!!! 

Norman asked me how I was.  I couldn't even speak.  I was just so full of angst and general worry.  I managed to blurt out that I found a nasty lump, but I couldn't talk about it any more than that.  Norman insisted that I need to see my shrink earlier than january, which was my next appointment, and he went off to make the appoitment.  I waited for ten minutes, but began to feel like I couldn't breathe, as if I were suffocating.  I have heard people say they felt like the walls were closing in on them, but today I experienced it for the first time for myself.

I walked into town in a bit of a daze. It was as if I had tunnel vision.  I went to pay for my glasses, and was pleased to get some points on my boots card, lol.  Small things please small minds etc.

My breathing was a bit ragged all day.  A true reflkection of my state of mind.  I have my next appointment with my consultant at the ent hospital on monday, so I should be able to get that checked out.

And besides that, I am just worried.  I've spent most of my adult life wondering what it feels like to be an adult.  This week, I found out.  I've never felt so shocked in my life.  I feel as dazed as if someone had dropped bricks on my head.  Maybe it would be better if they did.

It seems that having a serious illness such as TS does not exclude you from developing another serious illness (or potentially serious illness).  So just be alert.  Complacency is not a good thing.

I've been spending the last few days wondering how long that evil little lump has been there.  Hopefully, not so long. 

Best wishes folks, have a lovely day.  Good breathing and good health.  And good night!

Just when you think you can relax...

Hey there!

Today has been a not so great day.  My breathing is fine; by that I mean that it isn't significantly worse than usual.  TS is not the thing bothering me today.  I will be honest; I found a lump.  For a woman, lumps are not such a great thing to find.  I know that 75 percent of lumps are benign, but my mind has raced ahead and started thinking about what would happen if I need surgery for something other than my airway. 

Because of where I live, I would be referred to Queens' Hospital.  Queens' is probably a really nice place, but I have had nothing but bad experiences there.  They told me bluntly one day 'why do you bother coming here?  We have no experience of treating TS, and no equipment to treat TS.  If you nheed to go to hospital, you have to go direct to the hospital in London treating you'.  Fair enough, but the hospital in London treating me (the RNTNE) no longer accepts walk in patients or self referrals.  Which means that I have two choices; to either go to the Lonhdon Hospital, or UCLH.  The London refers their ENT patients to Barts Hospital, which is no good to me as I need to be sent to the RNTNE.  Which leaves only UCLH.  One day, I will tell you a long story about what happened to me at UCLH, but to cut it short, as I once made a very serious attempt to hang myself in the hospital bathroom, they now insist that when I am at their hospital, I must be either guarded by security, or escorted by a RMN.  This is fine, absolutely fair enough.  But it's quite distressing when you can't breath and are in terrible pain because of it.  C'est la vie, and all that.

So my worry is, if I do need surgery to remove the nasty lump in my breast, where am I going to go?  What do I do?  I can't go to Queens'; they can't deal with my airway.  I'm not afraid to admit that I am frightened.  Not because of the lump, andall that entails, but because of the logistic problem.  What is to become of me?......  lol, dramatic or what?!!

Sorry for wittering on, like I say, it's been a stressful day.

My message today folks, is check yourself for lumps and bumps carefully; you never know when it will save your life.  TS is not anh excuse to neglect your body.  You are unique and special people, so please take care.

Have a great day.  And look after yourself!  See ya soon XXX

How do other people react to TS?

Hey there!

I've been thinking about living with TS a lot this week.  Normally, it doesn't bother me so much; I try and let my personality override any physical disability that I might have.  But sometimes, there is just no getting away from the fact that my airway is damaged beyond repair, and my voice is damaged also.  The scarring on my neck is also messy and very very obvious.

I was in the supermarket, packing my groceries.  I spoke to the cashier, who said 'what?'.  I spoke to him again and again, and got the same response.  However hard I tried, he just could not ( ort would not) understand me.  My voice used to be very low and smooth, but I had grown to like it.  I was told that I sounded kinda like Mariella Frostrup.  But now my voice is very low, and sounds damaged.  I sound like I have a permanent and very bad case of laryngitis.  And I hate it.  Sometimes, people greet me with 'hello sir!', even though it is blatantly obvious that I am not a man.  And a lot of the time people say to me 'you have a cold, don'r you'.  There are only so many times that you can explain the same thing before you lose your composure.  I shouldn't complain, I spent over a year with no voice at all (which was horrific), but I really feel as if |I have lost part of my identity.  It's something that I get kinda depressed about.  I joke about it when I am at work.  I tell people on the phone that I am faking a sexy voice.  The men love it.  The OB/GYN doctors love it the most.

The scarring on my neck gives me problems sometimes.  Although I am now very much used to it, the general public are obviously not.  I get a lot of children staring at me, and sometimes the adults join in.  They should know better, so I tend to stare back.  I am a human being and not an exhibit in soe kind of open zoo.  I am a young ish woman and I want to look attractive.  But there is no way to cover the scarring, or to make the shape of my leck look normal.  I don't want to wear a scarf all day every day, and it's a hopel;ess task to try and cover up the scars with makeup.  If people get nosy, I tell them that I lose thye plot every now and then and cut my throat open.  Then they feel every bit as awkward as their staring makes me feel.  It's a childish response, but good for the soul.

The breathing bothers me.  Not the actual intake and expiration of air, but the noise that I make when it happens.  People can hear my heavy breathing, and they think it's a joke.  Hahahahaha.  Not funny, is it?

Sorry for sounding so bitter.  Its just that this week has led me to think more about dfying.  I've experienced respiratory arrests on several occasions, and I am terrified that that is the way I will die.  It's why I have been looking into Swiss clinics such as dignitas.  I wish to choose death on my terms.  Not a lot of people agree with me, but everyone has thwe right to their own opinion.

I hope that you all don't have to wrangle with this TS thing for as long as I have.  But if you do, then you have to fight as hard as you can to be able to live the life you want.  And there is no shame in admitting you can't cope, and asking for help.  If I c an ever help, please let me know.  I will do my very best.

I shall cheer up before I post again.  Have a lovely week peoples XXX

Sick of TS? Terminally so.

Hi All,

Y'know, there are days when I genuinely get sick of TS and all that it entails.  I got a letter from my Consultant the other day, and it said something that you never want to read in a medical letter.  It said that 'they (the medics, surgeons, etc) should continue to support me in leading a normal life as far as is possible'.  They mean well, I know they do, but what they seem to be saying is that a normal life is now beyond my reach.  I asked my doctor what he thought it means, and he replied that it's something they write a lot about people who have a condition that is deemed incurable.  Incurable?  Says I.  Yes, says he.  In other words, terminal.    And I just thought 'I will prove them all wrong, again'. 

I should explain.  Over the years of my journey with TS, I have had several near death experiences, a couple of actual death experiences, and I've also been told time and time again that I will never recover from TS, and I will always be too ill to walk myself to the toilet, or get dressed and washed in the morning.  Well, I tackled those hurdles one by one.  The first thing I did was to learn to walk again.  Then to get dressed.  Then my hair fell out.  My lovely long blonde hair.  That was a blow, I do not look good bald.  But when it grew back, it grew back thick, dark blonde, and (wait for it), curly!!  As someone who had straight hair her whole life, the curly was a real bonus.  I look at photos of that time, and I look like I have a blonde 'fro,  Straighteners were not common ten years ago!!  Not even in Essex!!!

I guess what I'm trying to say is that even when life deals you dirt, sometimes the sun shines on your head and flowers grow!!  They haven't given up on the idea of operating to replace my necrosed dead deaded tracheal with a bio engineered or tissue engineered one, but I guess they have introduced to me the idea that it might not happen.  And if it doesn't happen soon, I am done for.

I've started to make plans for my funeral.  Not wanting to be morbid, but I guess these things need to be done.  I have begun a list of music that I like.

1.  Harder to Breath by Maroon 5.  Because it's funny!!  I'm allowed to laugh at my predicament.
2.  The Air That You Breathe by Population One.
3.  Take my Breath Away
4.  Breathe by Kylie Minogue.

Other songs that I just like:
1.  Nothings Gonna Stop Us Now by Starship
2.  Anything by Nuno Bettencourt/Extreme
3.  I'm Going Home by Daughtry
4.  Breakfast at Tiffany's by Deep Blue Something
5.  Bailamos by Enrique Iglesias
6.  Until you Suffer Some by Poision

There are literally hundreds more songs that I love, many of them vastly different.  Music has been a huge comfort to me in some of the most painful and distressing days of my life.  I really hope that continues.  Without music, people miss out on so much.  My mum is totally deaf, and yet in her heart she can still hear the music of her youth.  She was robbed of her hearing, but her memory stepped up to the plate and won't let her forget the songs she loved.  That happens a lot in life.

So if you're struggling right now, I'm asking you to go out and try to find one thing that brings you some pleasure in life (keep it clean please) and get out there and do whatever it is as often as you can.  Make it within the law and productive, and you literally can't go wrong.  Seize the day and get as much as you can from life, don't just dwell on the nasty painful crises that life throws at us from time to time.

You have the power to be anyone you want to be.  Even physical limitations can be worked around.  Okay, I'm never going to be able to run marathons, for example, but I could get out there and support the people who do.  Getting involved with the community is a great way to distract yourself from your own problems. 

I just hope that today brings you better news than it brought me.  Forgive me for sounding lectury, lol, I just had some really lousy news and it's blown my mind a bit.  I'm trying to see the positive, but it might take me a few days to figure out where it is.  Sometimes the happy likes to play hide and seek.....


For now, my friends, have a good night.  Sleep well and be peaceful, there's nothing in life that can't be dealt with in the morning!!!  Sweet dreams X

What kind of scarring does tracheal stenosis surgery leave you with?

Aha, now this is a difficult one.  I have seen several people have major reconstructive surgery for TS, and a few weeks later you really couldn't tell.  They just had a tidy little scar that eventually faded into the natural creases of their neckline.  I have seen other people who are left with more obvious scarring.  But a little scarf, accurately placed, seemed to contain the problem.

And then there are the people like me.  If you have a predisposition to forming keloid granulation tissue (believe me, you will know if you do.  It's the large and lumpy bright red kind of scarring), then you are pretty much guaranteed to be scarred for life.  My neck is, in the words of my surgeon, a total bloody mess.n  I guess that after six tracheostomies, a few failed attempts at reconstruction, and a hundred or so stitches for stents, you wouldn't expect anything less, lol.  I've learned to live with it.  When people ask, I just tell them that I am a survivor, and proud of that.  And you should be proud too.  There are things you can do to reduce the scarring.  You can put that bio oil stuff on the scar line. Some people swear by it.  Personally, I find that accepting the presence of the scar is the most psychologically healthy thing to do.  Don't let ignorant people make you feel uncomfortable.  There will be people who say 'er, what's that?  Yuk', but don't let them get to you.  These are the kind of people who were knocked on the head when they were young.  They can't process anything different.

The scarring will get better over the years.  It will become flatter, and the raised red ridges will fade to white and flatten.  But it won't happen overnight, so have patience, and don't let anyone make you feel like you should hide it.  Your scars are a sign that you made it through a tough and life threatening journey.  Be proud of them.

Take care.

Can tracheal stenosis be cured?

This is something that I have been considering for some time now.  Pondering, you might say.  The big question is, can tracheal stenosis be cured?  Well, I must begin by stating that there are several 'types' of TS.  There is the 'acute' variety, which occurs suddenly and can be cured very easily.  And then there is the 'chronic' variety, which is not so simple to resolve.

As you might have guessed, I have what they call chronic tracheal stenosis.  My TS developed after intubation, and was total (it blocked my entire airway), and it blocked a long segment of my airway.  I believe that something like ten centimetres of my trachea are damaged by stenosis.  That makes it difficult to deal with.  They could not just cut out the damaged section and remove it, and join the ends together, as this would have left me with a very short trachea indeed!  So instead, I underwent an interesting surgery to open up the damaged section, and graft in a donor section of trachea.  I was in hospital for five weeks after this major, major operation.  And you know what?  It failed.  I developed tracheomalacia ( a floppy airway).  This was the last thing I needed!! 

So over the years, I've had 100 or so procedures to laser out granulation tissue in my airway and place a stent in to support what's there.  And when that failed, I've had tracheostomies.  Six tracheostomies, to be exact.  I've had pink ones, I've had green ones, I've had blue ones, I've had yellow ones and they're all pretty icky and they all look just the same, lol....  I have never had a silver one.  Maybe next time, eh?

So ultimately, my surgeon told me that my TS cannot be cured.  And I calmly nodded my head and said 'c'est la vie'.  I walked out of his clinic, I walked upstairs and out of the hospital.  I walked along the length of Grays Inn Road, till I reached the station at Kings Cross.  I got on the train.  I got on another train.  I got as far as Stratford.  And as the crowded train left the station, I broke down completely.  I am only human.

The moral of the story today is this;  all of these radical surgeries are great.  They save mnany, many lives.  But they do sometimes fail.  You must understand that the consequences of failure are severe.  So when you have to make decisions about surgery, make them carefully and do not let anyone at all rush you into making a decision.  I say this because I care, you must look out for yourself.

Aggravated!!

When I say aggravated, I mean my soul AND my body.  Lets start with my soul....

Today I went out for dinner with my mum.  We went to the Carvery just over the road.  The food was kinda mediocre, as compared to food I had there a couple of weeks ago.  It was annoying.  The idea of a cheap early diner bargain should be that you get the same quality of food that you would get at any other time.  But life doesn't work that way, does it.  Anyway, my mum had been expecting a payment from somebody, but when she checked her bank account, there was a big fat zero.  SO she spent all of the meal feeling upset and anxious, when it later turns out that they made the payment, it just won't clear till tomorrow.

Anyway, onto this job that I was offered almost four months ago now.  The thing that's holding it up is not the hospital.  It's not my referees.  It isn't even my health checks.  It is the CRB check!!  I got an email today asking me to resumbit an application, which is a pain in the wotsit, as the details are exactly the same as they were before.  So I got right to the end, clicked submit....and it crashed halfway through sending it.  Again.  Absolute joy.  But I did get an email telling me they got it, so I guess it worked out eventually.

Onto my soul.  Now, my surgeon told me something life four years ago that they were working on a tracheal transplant, and I was top of their list.  I saw my surgeon last week and it turns out that, y'know what?  I'm NOT....  It would be easier to understand if you knew what it was like to spend 14 years gasping for oxygen on a daily basis, multiple arrests and major surgeries.  Frustrating isn't the word.  It's actually downright scary.  I have spent almost half of my life now waiting for a cure.  The only thing that keeps me going is the promise of a cure.  But it feels like it will never happen.  I will never give up hoping, btw, don't get me wrong.  If they tell me that transplanted toad skin made a great replacement trachea, and they needed a guinea pig, I would let them do it!!  My surgeon told me ' you don't want to be the first'.  I disagree.  I do.  I do want to be first.  I've spent so long waiting, and my breathing is so painfully bad, that of course I want to be first.  I want to be cured.  I want to not feel like every day might literally be my last.  Bugger.

The poor quality of life that I have at the moment will never be enough.  I will make the most of it for sure, but think what I could do if I was well?  Just think!!!  I'd aim to be one of those illusionists in the deep south, lol, like the guy in X Men, hahahaha....

The worst part of the health issues is the tiredness.  I can only go for about two to four hours before exhaustion kicks in.  It's a pain in the you know what, because nobody believes that somebody who looks as healthy as me can be so tired and in so much pain.  It makes them short on understanding.

Today I am a little down, but I suppose what I want to say is, allow yourself to have those down days.  But pick yourself up again the next day and fight your ass off to stay alive.  You are to important to cave in to something like tracheal stenosis.  It's a hard fight, but no fight worth winning was ever easy.

Take care.  Listen to a nice oxygen filled song.  Like 'It's getting harder to breathe'!