Tuesday, 27 September 2011

Scar, you're a scar!....

Ha, a little play on words there.  It's a bit random, cos I don't know how many people out there will know the Extreme song 'Star'.  But what's done is done :o)

Soooo, yesterday I had a clinic appointment at the ENT hospital in London.  I decided to go on my own, so my husband got to doss around in bed all day.  Lucky him!  I decided to go on my own, because my other half seemed to be getting a bit confused, and thinking he was my carer, not my lover.  There's nothing that kills your love life more than watching your husband walk off and have a chat with your doctor about you.  So to make my boundaries clear, I have relegated him back to the role of other half, and the doctors now have no choice but to deal with me. 

Anyway, my consultant was in, and on fine form.  He told me that on thursday, he will be performing a tracheal transplant on a young lady who is in absolutely dire straits.  He apologised to me, as I was supposed to be the first, but I guess that if her need is greater, then she needs it more than I do right now.  He's a nice chap, my consultant, but he takes a long time to get to know.  He's generally quiet, and he has that stiff upper lip thing going on, but once you really talk to him you realise that he's just a normal bloke, with a normal sense of humour.  People who expect their surgeon to be God, they're the ones who get disappointed in life, y'know?  So anyway, the outcome is this, my airway is still completely dead, and solid as rock (albeit not in a good way).  But it's not as fecked right now as this other poor kid.  I think all of us should say a prayer for this kid, and her surgical team. 

My life, health wise, is pretty miserable right now.  I have this huge area of scarring on my neck, which extends right into my throat.  I had an infection a couple of years ago which ate almost all the way through the skin on my neck.  It went green, then black, then turned into liquid.  It was disgusting, and the idiot 'doctors' at the loony bin kept sedating me every time I complained about it.  Medical negligence?  And then some.  But I'm allowed to mention Mascalls Park Hospital, now the shitehole is a shuthole. hehehe.....  I wake up every morning with a mouthful of mucuous.  Mucous is basically a heady mixture of what other people would call snot or phlegm.  It isn't pleasant.  I then spend the first two hours of my day on a nebuliser to help me cough up the rest of the mucuous that has settled in my lungs overnight.  I take medication.  Carbocisteine thins out the mucuous in my lungs, helping me clear it.  I take two of those three times a day.  I use an inhaler, Flixotide.  It's a steroid, and it helps keep the swelling in my scar tissue down.  This is a good thing because all my scar tissue is in my airway.  My trachea is pure scar tissue.  I take 40mg oxcodone.  I take this 4 times a day.  I know it sounds excessive, but it's the only painkiller I have ever had that has mostly worked to control my spinal pain.  The spinal pain isn't like backache, people get that totally wrong.  The spinal pain is caused when bones in the spinal column rub against each other.  They're not meant to, lol, and that's why it hurts!

More medication, pregabalin, carbamazapine and priadel lithium, all help to control mood, mind and other nerve based problems.  And of course there are the almost constant nebulisers.  Most of the day revolves around treating my tracheal stenosis and associated lung problems.  When I have my tracheal transplant, and I am sure this will happen soon Mr S, hahaha, I look forward to getting my life back.  The freedom to make choices that are not based on medication or side effects will be the biggest thing that I gain.  Want to get on a plane to New York?  Sure, I'll be able to do that without having to first spend three weeks getting medication, copies of prescriptions, and letters saying I'm fit to fly.  Screw all that, I'll be able to just hop on the sodding plane!!  Can't wait.

The biggest thing will be being able to take a full lungful of air.  God, I would kill for that right now. 

Spare a though for the kid having the major airway surgery.  Air is a good thing, it keeps us alive and afloat.  I hope with everything that it goes well.  Good luck to all of them.

Sunday, 25 September 2011


Lol, I thought this story might make you laugh....  on my last visit to the OPD clinic at the ent hospital, I sat in my usual place, just inside the little clinic doors.  It's nicer there.  There are fewer people, so it's quieter, and they have air conditioning.  Anyway, the SpR came out and asked a lady sat next to me if she was happy to see him.  She answered 'No, I absolutely must see the consultant, we have a 'history'' in such a pompous tone of voice that it instantly made my hackles rise.  FFS, I thought; EVERYONE in that damn clinic has a history, it's why we're all there!!  Lol, talk about non engaging brain before mouth.  So anyway, the SpR just shrugged and said 'okay, but you'll have a long wait', to which she replied 'fine'.  So then he called me in.  I've known the SpR for a while now. He's a nice chap, good at what he does and very gentle.  So I was very happy to see him.  He wasn't able to deal with what I needed instantly, so he asked me to wait in the outside clinic again, which again, I was happy to do.

So this woman who had stated five minutes previously that she was happy to wait for the consultant suddenly started to kick off.  She started going on about how she was 'obviously next, as her appointment was waaaay before anyone elses' lol.  She then started to drag me into her row, and said to the nurse in charge 'sheeee has already been seen, so ignore her, and....' and it was at this point I intervened.  'Please do not drag me into your row', I asked.  I asked nicely, mind, I said please.  But she ignored me and carried on.  I asked again, 'Look, I am still waiting to be seen.  Please do not tell people that I am not.  You do not know anything about me or my situation, so kindly do not refer to me in your row.'.   But she still carried on.  At which point I told her to 'shut the F*** up.  These doctors and nurses are working their asses off to help you and all you're doing is moaning at them.  Please do not drag me into this.'.  And still she carried on.  So I turned to face her.  I said 'clearly you are incapable of understanding that you are not the only person in need of medical help today, so let me make this plain; I am dying, as is almost everyone else in this room.  We have bigger problems than you.  You have no right to try and stop me being seen by my doctor at my clinic appointment.  And if you don't fuckin shut up, I will personally make sure you do.  I will remove you from the building myself.  Understand?'.  And she started spluttering, lol, and then she said 'excuse me?', which I blanked.  She then poked me.  And I said, very slowly 'do you enjoy having five fingers?'.  Hehehehe, she eventually did shut up.  Anyway, her appointment was at 1 45 and mine was at 155. But I got called in first, haha, again, which sent her into absolute total fury.  It is fun sometimes, letting go.  Just be careful that you stop before it all goes too far, y'know?  She had no right to interfere in my healthcare decisions though, and on that point I stand firm.  It is generally only the well who have the energy to create such a hissy fit in clinic.  The really sick people are usually too grateful or desperate to bother.

Saturday, 3 September 2011

And so it begins!

The weekend, that is.  I hope you're all having the same kind of weather we have in London right now.  It's actually reasonably bright and cheery, which makes a refreshing change.  It's good for the lungs, too.  I have been using flixotide inhalers to try and calm down my airway a little, and I don't want to tempt any kind of fate by saying it works completely, but I do get the feeling it helps somewhat.  With stenosis like mine, anything that helps, even a little bit, is worth trying.

I've been making preparations for my trip.  Unlike most people, when you have a chronic illness, trips away usually involve making sure your health is covered.  My lovely auntie already bought and paid for my travel insurance, and included cover for my condition, which the insurance company always lists as tracheostomy.  It's reassuring to know that if the worst were to happen, I can get the funds to pay for it!  Always declare airway problems when you travel, it just isn't worth risking what could happen otherwise.

And then I dug out my travel nebuliser.  I don't find it's as effective as the mains powered one, but in a crisis it is better than nothing.  I found a company in Canvey Island, Essex, that rents nebulisers for trips.  So if I were to have a last minute machine malfunction, they would be the people I ran to.

And then I had to get a letter to say that I have certain medical conditions, and I take medication because of them.  This is of course to make sure that I don't get arrested for trying to smuggle drugs!!  Lol, God forbid that should happen.  I take copies of my prescriptions as well, and a letter from every consultant that I visit.  So I am as prepared as I ever can be,

And then we move on to packing clothes and things.  My husband and I are sharing one suitcase, which we hope to carefully fill so there's a little space to bring back souvenirs, goodies etc.  I carry my medication and nebulisers in a backpack that I take on the flight, my husband has everything else.

And now I'm starting to panic again.  Thank heavens for temazepam, lol.

My care co, Norman, was lovely and helpful yesterday, and he provided me with a medical letter without even being asked!!  What a great man :o)

I have to start tidying the house today, and cleaning up my equipment.  To be honest I'm a bit of a slob, but my mum is taking care of the flat while we are away, and I don't want her to realise quite how big a slob I am, hehehe.  She's looking forward to staying; she loves my cats and they love their nan.  It'll be fun for all of them, I hope.

Have a lovely day, speak really soon :o)  Keep breathing, blue is not a good colour for the skin!

Thursday, 1 September 2011

What goes down must come up!!

Hey there, it's been a while.  Well, I can't say that I have been up to much that's interesting.  As you know, I had surgery early this month to change my stent, and whilst the surgery seemed to go okay, there were a few complications.  One was that I got seriously disoriented after the anaesthetic, and tried to make a run from the recovery room, lol, they had to chase me down a corridor and pin me to a wheelchair, literally.  I had a CT scan the next day, which didn't show up anything too major,  although it did prove that I actually have a brain!

After being discharged home, I realised that my airway was closing down a bit.  It turns out, I had a mjor infection which was putting pressure on my poorly trachea, thus making it difficult to breathe.  I had to wait six hours in clinic to see the consultant to prove that I had an infection.  It was plain to anyone who looked at my neck that it was inflamed, why did they have to put me through the trauma of sitting in clinic for so long?  It was interesting to find out that they have bed managers deciding who has what procedure and when, not the consultants.  It's terrifying to think that administrators with no medical training are the ones deciding the medical fate of so many chronically ill people.  And yes, I am talking about the RNTNE.

They treated my infection incredibly well, once I was admitted, and I spent the week being infused with teicoplanin, aka targocid, which seemed to do the job.  I was also given fucidic acid for the fungal infection in my lungs, which did the job but also made me vomit on a four hourly basis.  Yuck.

I was home for a couple of weeks after that, but very very depressed.  I've done little more than read and sleep.  I made the decision to go back on the lithium after yelling like a nutjob at three people in one day.  I have to say that at least two of them really did deserve a good slapping, but there are probably more effective ways to achieve it.  So the drugs are all doing their job, and life is trotting along fine.  It's boring, but fine.

It's my birthday in a few days, and I have been given the most amazing present; a holiday!!!!  Thanks to my very generous relative, my husband and I will shortly be jetting away for a six day break.  So please pray to whatever God you believe in that my health will stand up to the challenge. I also was given my soda stream, Sebastian (named after the lead singer of Skid Row), because it barks (Bachs)!!!  You'll only understand that if you're a rock fan.  Apologies.

Just off to do my last neb of the day, and take the truckload of medications that I have to chuck down regularly.  I always end up forgetting the tegretol, but I'm sure the other three anti epileptics will take care of that, lol.  I take carbocisteine to thin out my lung juice and stop it from scarring up my lungs.  If you have thick lung secretions, it's worth discussing with your doctor.

Night night peoples, see you again soon!!  Keep breathing, it's good for the body....