The big one.

To say that I wasn't scared would be a lie.

I had my week away and got back late last night. Unpacking and repacking was not the thing I wanted to do very much as exhaustion was a pretty heavy thing. Not to mention that I really wanted to spend today helping mum. Whilst away we had new floor laid and though it looks very nice, there is a fair bit of cleaning up to be done.

The holiday was great. Time resting, soaking in some sun and just generally spending time with my parents away from the stress of hospitals and building.

Taking a dip in the sea or pool would have been nice, but that is a luxury that I may get on my next holiday. I actually kinds did take a dip in the pool though a little unplanned. My legs were really hot and so on the way back to the room after a couple of drinks I decided to paddle through the kids pool thinking it would come about half way up my leg. But as I stepped down into it, it was deeper than thought and so u ended up in almost to my waist and having to grab my bag to stop my camera getting wet, ignoring my dress that got soaked. But it was fun.

Anyway by 7 this morning I was on the train across country that would bring me back to London. And here I am sat in the hospital.

This is where the fear sets in. Soon they will be taking my trach out and going that I can make it till next Tuesday without my airway failing completely. I do still worry that I won't last, but there are options in place should things become critical, as they say.

I guess it just stirs up old trauma of respiratory arrests and such, but this hospital is much more specialised and hopefully things won't get that far. Of course saying that knowing how my body never does what it's expected it may not become a problem at all.

Plus there is always the aspect of an ICU stay. It should only be one night, but that is still the place that haunts a lot of my dreams.

I find myself wondering often why I keep putting myself through this. The risk of making things worse and the fear and pain that goes with it. This is after all very major surgery. For a while I will have no airway at all and will rely on a tube thread almost into my chest for ventilation. Not to mention the complaints my lungs will make along side the surgery.

But it is some why I do it. For the chance to be able to breathe. For the opportunity not to spend my life in hospital. Simply fit the chance to live. Living is one of the biggest life forces your body can attain towards. Each big surgery offers me a chance to get my life back. And that chance is what I have to go for. It's that chance alongside my hopes and dreams fit a future that make the pain and fear worthwhile.

The chance to live, to have a family, be a mum, work and build a career and live a long and healthy life. One not effected by inability to breathe and the exhaustion that comes with your heart trying to keep up.

Now I just need to keep them goals in mind and all will l be well for the next few weeks of living in captivity.

roundabouts

My mind is in a mushy phase and I am not sure if I can explain it.

Things right now are not ideal. I think everyone knows that. Right now, I am spaced out and tired. My pain issues seem to go in an inflammatory patter. As if my body says ouchie ouchie lots and I have a lot of pain. Then gradually, it lessened  it forgets about the pain and forgets to remind me. I get a few days of no pain. Then one night, I will wake in agony again, as if my body has decided to say, oh you do know that pain is still there right? Let me show you where and I will be as loud as I can so you cant miss it.

right now, I am in the midst of one of these flare ups. Which means that I am dosing myself up on numerous meds including my morphine. You see when it hits, I have to keep on top of it, every 4 hours or so to take more. Whereas just days before, I wasnt taking anything.

It is frustrating, but the most annoying part is how the meds make me feel. They suck away the last of my energy, they make me tired beyond belief. But heres the funny part, I cant sleep. I will close my eye, and begin to drift off and then I will stop, stuck in that place for hours between asleep and awake.

Then comes the itching. I take piriton and such, yet I scratch so  much people must think I have fleas. Scratching feels good though. The sensation of scratching an itch is a wonderful feeling of relief and pleasure. But the more you scratch, the less pleasure, as your skin becomes raw and even my finger joints swell from the movement.

And the added side effects, the long term disadvantage to all the surgery, is that the pain gets worse. Operations have complications. Where as my pain at one point was limited to my throat, it is now also between my ribs and in my thigh. Today, I almost cried while standing in a clothes shop. It felt like someone was stabbing me in my leg. Its been numb for months, kinda like when you spend to long moving stuff in the freezer. But this was differnt, this was sharp. I just hope that it is the graft growing, rather than dying.

But do I really hope that?

My first answer would be of course I do.
But on reflection, the risk of making things worse is high.
I have had this trach in for over a year now. The wound has healed. The tube is steady. And I cant help but think back to last year, where the tub get drifting upwards, leaking lots of fluids and causing so much irritation that every part of me ached from coughing.

I know that the trach will be coming out, then going back in after the surgery and hopefully out again a month later. I hate dealing with a new trach.

Of course, to add to that, is the possibility of more complications. Of ending up worse than I am now.

Of course, it is a risk I will take, but I dont go into it blindly. I know the potential for reprecussions. I know the risks. And that is why, I stand my ground and say, this is the last big op I will risk. Once the trach is out after this surgery, My wishes will be made clear and documented.

Its not that I am being negative.
I guess i just know, deep down, that I can be an awsome person. I can do amazing things for myself and others. But I cant do it with this leash around my neck. It is holding me back and there is only so much of that I can take before I go crazy.

I wasnt born to be a hermit. To talk to virtually no one. I shouldnt be terrfied to go to sleep, nor stay up till the early hours of the morning trying to avoid sleep and thinking. Yet I am and to add tot he comical features of that, I am also terrfied of the day time. Of the work I need to do, the tasks to complete, the potential for things to go wrong.

Its like I am scared to sleep yet dont want to face waking. So I end up not really doing either and getting nowhere because of it.

I know my fears are getting out of control again. I know my anxiety is rising and I know my risks are too. Choking in the middle of a shop, whilst people stare from a distance. The worried looks, from both the passers by and whoever I am with. Tears running down my face from the pressure of clearing my throat. To finally clear it and feel totoally overwhelemed as a wave of exhaustion hits.

To have to put so much force on my narrowed airway, to get the crap out of lungs, that I often bring up my stomach contents at the same time. I have been on meds for over a 18 months, to try to prevent coughing up blood, but little controls it. I barely even notice it these days, just another chronic to add tot he list. Since when did blood become just one of those things, like breaking a nail or stubbing a toe.

My body is in such disreagard. My lips lacking colour, my nails snapping or falling off completly, my skin flacking off and my memory being so poor that I am able to watch a film one week and rewatch it the following week not recalling any of it.

and yet I know I am lucky and I am oh so greatful to be here. I know that there are people in much worse condition than me. And yet it is the fear that holds me back. It is the fear thatbrings the toneof everything down. Now if i could just sort out this whole sleep mess crap out instead of falling asleep in the most odd places and positions, then perhaps I can deal with some of these mushy brains and ideas and memory.

I am thankful. For so so much.
For the chance, for the hope, for the time.
But I am at a cross road, balanced on a needle tip, having everything on one side and absloutly nothing on the other side. spining, spining, round and round and out of control. Where will it stop, nobody knows. damage control, traffic control. permission to land.

Sleep, the enemy and the best friend as my heart pounds away, eager to see how tonight will end and the next begin.

Thinking

Well I am still in, which I am not as upset as I thought I would be.]
The other night when I couldnt sleep, turned into a full night of being so wide awake, more awake than I usually am of a day. The next day was hard, I ended up getting up at 7:30am and having a shower in hopes of it waring me out enough to get a couple of hours rest. No such luck, but an early night the following night saw me getting some rest once again.

Monday, on ward rounds, I was feeling better, but still not where I usually am after a 2 week course of IVS, so we decided to send off some more samples (I was meant to send them last week, but given that I wasnt able to move the crap on my chest, I hadnt ben able to get anything) and give a couple more days of IVs, given that my line was still playing nicely.

And so that finds me here, with far to much time on my hands for contemplating.

I think I am reaching a place where I am starting to forgive myself for not bouncing back the way I should of after transplant. You read so many stories of people getting a new lease of life and making the more of it. I have always had this guilt, that i was not worthy of such a gift because I have done nothing with it.

But time is healing and I realsie, that coming back out of ICU, I was unlikely to bounce back. I am reading a lot of documents at the minute for the solictors and they are giving me more info into the past. Coming back from 3 months of lying flat and not using any muscles is hard enough for anyone, but I did it with a crappy airway.

Since getting out of ICU that first time, my airway has been at about 50% what it should be. Coupled together with damaged lungs and a healing abdomen, its no wonder I have never been able to return to full fitness.

As I sit here and watch the meds go straight to my blood stream, I know I am lucky. I know I have a long way to go before my body gives up. And believe me i am thankful for that. But I also know where my frustration leads from. I want to be doing things, yet my body dosnt let me. The airway is a problem, but its the effects you dont think of from that that give the hardest problems. The constant exhaustion. The fact that even a small excursion is enough to wear me out so much that I sleep for the entirerty of the next day.

 Its not the breathlessness that gets me down, its the constant exhaustion.

But alas, It is what it is and all I can do for the time being, is wait for change and make the most of the oppertunties that present to me.

It's 3 am and I can't sleep.
As I approach the 2 week mark on this admission and prepare for discharge on Monday, my system is super saturated. It's pumped full of steroids, bronchodilators, anti biotics and god knows what else. But the biggest question, the one that it all comes down to. Do I feel better?

Now that takes a little more thought. I have started coughing again. Who knew I would miss coughing. Coughing means the crap in my lungs is actually coming out. Which in turn will allow oxygen back in. But the flip side and there is always a flip side, is that my muscles are once again complaining from the coughing. This will settle and I know that, but that dosnt stop it from being tiring.

The other side is that a mix of nebulised steroids and the wonderous prednisone is having fun playing with my heart. Slowly my blood pressure and pulse are heading skywards. My resting pulse today was 122 when it should be about 80. Considering I am already on 2 lots of meds to keep my heart slow, these numbers arnt great. From past experience my pulse can get to 130 before we have to head back to more tests. Of course there is also the whole cusshings stuff to watch for. Been there done that, that was so 2010. But let's just say, the sooner the steroids stop the better. Lets just hope my breathing dosnt decide to go with them though.

The start of this admission was a bit of a mess but I met say, the rest has been really calm. The staff on this ward are getting to know me now. They know my history and they know what my future looks like. But it's more than that. Perhaps 4 th time is a charm, but conversation comes easy now. Everyone shouts hello on the way past, they remember my name and they do little things for me. Silly things like not waking me up for pointless tests of a morning or to ask if I want breakfast. They automatically know my dinner order and they trust me sorting my own meds. One of the HCAs today had made millionaire shortbread for the staff but he stopped by to give me a piece on his way past. When people come in to do things like blood pressure they sit on the spare chair in my room. It's nice that they are comfortable enough to do that.

It probobaly sounds odd. I can't explain it. But it's nice in a way. The personal touch. Of course it is extra support and even the doctors seem to be getting to know me better. Next week will prove a test though, bent home and fully in charge of my own care once again.

That's the thing with hospital. I am only expected to be active for a few hours a day and that suits me perfectly. But that dosnt fit with real life. Nor does it fit with my mind set. Once again my mind rolls around the question of what is the point. The meaning of life so to speak. I want desperately to be useful in someway. But I can bearly keep myself going how I can I help others. I put it off. Things will be easier when I am better. But let's be truthful, is that ever going to happen? The longer my throat plays up the more damage is done to my heart and lungs. For my condition lung transplant would be a subject that would eventually, if the need was there, be bought up. But in truth, I don't have the strength to go through that. I admire people waiting for lungs. They work bloody hard. Between treatments, physio and very strict and hard medication regimes. I couldn't do it. I wouldn't even consider it.

But alas, it's late and I am rambling. Hopefully the pain meds are kicking in enough now to make me sleep a little. Or at least rest for 3 hours in time to wake for my next iv.

Oh and my long line is still going, though I have to keep my arm straight and it is starting to heal over but yay for no more bruises.

homey home

I have been getting a lot of spam messages on here so unforuntly I have had to turn comment verification on. For now, I have left it so you can still comment without a username, but if leaving a comment do give it a few seconds once you post for the verifaction to appear.

So, I am home. I got home the start of the week. What an eventful week it has been not to mention an eventful hospital stay.

Surgery wasnt without its how hitches. I left the ward at 2 and didnt return nearly 10.
The plan was to plant the cartiledge that they took from my chest and put it in my arm. Turns out, after a lot of digging around, they were unable to find an adequate artery in my arm to connect to the cartiledge. So despite my wrist now having being rather bruised and stitched from them digging around, it served no purpose to the surgery. They had to find another area to place the cartilege, so that is now in the top of my left leg. They took 3 large piece apprently and I have 2 sets of insicsions on my leg.

And last but not least I have an inscsion on my chest, just under my boob. The chest one always turns out to be the most painful, but then, they do dig around a fair bit from the one area.

From waking in recovery, the chest area was painful. I was written up for 20mg morphine IV, but we went right through that with my pain levels still way above control and my heart suffering for it. We added IV tramadol to the mix, which I have never had before, but it made little differnce. The anaesthetist in the end came and gave me a large dose of Ketamine with a top up pain button of fentanyl. He was a nice guy and joked that for most patients, with what I had had, he would be scrapping them off the roof as they would be so high. Yet, I was having regular conversation with him. Eventually got to the ward and after some minor hicups like flooding the bathroom (oops) managed some sleep.

There are a new team of ENT docs on, none of which seem to be very wise. They pretty much wanted me to go home the next day, so they said they were stopping all my pain meds and would begin the works for sending me home. I pretty much lost it at the point, given that I was still in agony and feeling rather rough. My nurse for the day had already commented about how crap I looked and so after she shouted at them, I eventually got to see the pain team and a plan sorted. I had regular Ketamine addded to my list as well as the fentanyl pump and over the next couple of days, slowly began the process of moving about and keeping things like my lungs functioning.

At the weekend, I had another fight regarding pain meds, which left me going from major pain relief to nothing, for almost 14 hours. During which time, I also broke my expensive tablet, that I was using to keep me sane with entertainment. But eventually, monday night, things were in control enough to manage, and I arrived home.

Since then, pain has still been a big issue. Mainly still in my ribs, but also in the base of my lungs. Things didnt feel right and so I ended up first at the walk in centre, then in resus in A&E. I had a suspected lung collapse or blot clot. x-ray had a more shadowed area on it than is normal for me. Blood were eventually taken, though it was difficult as my veins are still sulky. They came back clear for infection. Arterial gases were obtained, that showed that I was hypoxic (lacking oxygen) And urgent CT scan was ordered, but I needed IV access that no one in the A&E had been able to achieve. Anaesthetics were called and eventually we managed to get a line in. CT was performed, but showed no major clot or collapse. The first doctor had said she wanted me to stay the night anyway as I needed oxygen. They decided to keep me in overnight for observation and further tests, though the second doc, decided to ignore the results and not use oxygen.

The next day, I had been transfered an othorpedics ward, and I was eventually review by a gastro doc. Which seemed a bit odd to me, espically given that my complaint was in relation to the chest. anyway, despite my bloods saying that I didnt have an infection, they decided that was the cause of my pain and I was discharged with a set of antibiotics.

Things havnt really changed. I look so pale and ill and still feel rather crap, not to mention sleeping so much when I can get comfortable.

Things are pretty bleak at the minute and I spend a lot of time juggling pain meds, to keep things moving. Even on my max dose though, a coughing fit leaves me clutching my chest in tears. my boob closest to the surgery is also throwing a tantrum and adding in lots of nasty side effects.

And that is basically where things are at right now. It feels harder to hold on to good, and the pain is wearing me down hard. I know it will get better, it just needs time. But that of course is always easy to say.

Plus, I am kinda hoping that it isnt infection in my chest, although that was the less of the 3 possible evils. The reason being, that if there is a darker area on my xray, that is different from previous xrays which is what the doc said, then this will mean that my lungs are deteriorating. Not a good sign really.

Anyway, time for sleep. Seeing as last night I slept for 14 hours solid oops. (and given the fact that I cant spell hours or solid)

Change

It is strange the way in which your body adjusts. Things change and they often do it so slow that you dont notice.

I remember the days when I used to be given a course of antibiotics and within a couple of doses I would begin to feel much better. They were like magic pills with hardly any side effects. As time has gone one and I have required them a lot more, my body has changed its opinion of antibiotics. Now, it fights them as much as it can. The side effects are horrible, from feeling drained, to having tummy trouble or headaches. Along with feeling a lot more rough, it usually takes about 6 days before I begin to notice any differnce. I guess from that I can see how people become resistant to a lot of antibiotics.

So yup, I am on antibiotics yet again. That means out of the last 6 weeks, 4 of them I have been on the meds. Not a great start, but at least things are getting under control now. I started last week with a water infection. I wont gross you out on the details, but after a week of seeing no improvement on antibiotics, they have since been changed to another type. Kinda funny, I know they system with the docs that well these days that it becomes second nature. I havnt seen a doctor. Nothing they can do really than write the script, which they dont need to see more for.

Apart from doctors and such, thing have been going ok. I finally got to catch up with my niece this weekend. It was nice to see her finally. I also have adventures planned for the weekend. Might as well make use of getting to spend time in London and have some fun.

Oh I now have all my pens stored nicely in my tin, which makes colouring in so much easier. You can guess what I have been doing the last couple of nights then. I do love colouring and I do like how much better i have gotten at it. It often dosnt look like much, but with shading and colours, I think, my images look much more professional now. Though, it is not something I could ever turn to profit as i spend about an hour on one image.

And now it is time to sleep. Pain has been keeping me awake the last couple of nights, so hopfully tonight I will be able to get some rest. Surgery a week today, so fingers crossed and all that jazz.

Busy

I have need to write a long and fun update, I know this blog is long lacking a fun element. But right now, I am tired and I should be sleeping. But I keep putting off writing and if I keep doing it, I will never keep up.

I traveled down to London this week for clinic. I wasnt going to go, seemed pointless as there is much they can do. But then, I thought, London hmm retail therapy? And that seemed like a good idea, so I went for it.

I had a big order of craft stuff to get finished and ideally I wanted to drop it off whilst in London as it would save me on postage and therefore mean more profit. So the few days leading up to London, were hard work. I always put demands on myself for things like that, expect to just be able to do it, when in reality it takes a lot out of me, I just dont want to admit it. But I finished what I needed to at 11:30 the night before. I was fairly proud of myself for getting it done, as my stomach decided to play out and so a large amount of time was spent in the bathroom which also left me feeling wiped out. On of those marvellous after effects of anti biotics, they wipe out your natural ability to fight certain things.

But I took my mum down to London with me and we booked a hotel so we could have 2 days. It was fun. Visiting Camden and Harrods on the first day and Oxford street and winter wonderland on the second day. It was a little frustrating in that I had to give in and go back to the hotel on the first day and have a 2 hour nap. Getting there and camden had wiped me out more than I imagined. it was odd as I love Camden a lot and could spend hours and hours there. Yet this time, from arriving, I was watching the clock and wanting to leave. But, I was able to do some of it and after a long rest in the cafe managed back to hotel.

I am getting to know my way around London fairly well now.
After clinic, we visited Winter Wonderland, which is a big market in the middle of Hyde Park. I do love the market. So many nice things for sale, lots of wonderful foods and mulled wine, whats not to like about mulled wine.

There were so many fun things to see and do there including, a carousel bar. It was made to look like an old fashioned carousel with big wooden horses, except the horse were made into tables and the middle was a bar. And yes, it turned the whole time. Only very slow, but turned none the less. Oh it looked so fun. Alas I was the mother and apart from complaining at the price of everything, she gets motion sick and so I didnt get to go have fun. But defo another year I will.

Didnt buy that much whilst in london. Some candle wax and a pair of shoes was about it, though we did have a lovely meal in Prezzo and apart from that, it was nice to spend some time with mum, without the narkiness that usually acompanies time spent with her.

As for clinic, the reason I was down in london ha, well, I am not really sure how that went. Even though I was resigned to the fact that there was no change, my dr insisted on looking down with the scope anyway. Although my airway is open better than it was now I have this other tube in, it is looking very red and inflammed again. This is usually when the scar tissue begins to build up, which is a fact I think we were already resigned to.

He was muttering on about the professor and funding, though, he seemed like he was trying to say something he shouldnt be saying, or perhaps I am just reading to much into it. I think it was about the professor seeking some extra sort of funding or permission and though he thinks it is still going to be 18 months before transplant becomes a viable option, if we go ahead with the next stage of surgery, and put the cartilege into my arm, that dosnt mean my options are closed. If things continue downwards, he is still not giving up.

Its nice that he keeps reassuring me that he isnt giving up, but I dont know. I cant remember if I wrote about when I spoke to him on the subject of giving up. I wrote a big poetic entry about it, but  saved it on to my ipod, then lost my ipod before I was able to post it. (feel free to remind me if i did or didnt post it)

Things are in a big circle. The scaring will continue to form, it however forms quicker the more movement that is put on my trachea. Its possible that the amount of coughing that I do, is part of what make the tissue form so quickly. On the other side, having a trach in, makes me more vulnerable to infection, which makes me cough more.

He wanted to try some new meds or some more IVs but when I told him what I was on and what treatment I have just had, he said you are already under more care than I give you in that respect, but let me know if there is anything that I can help with. I seem to have this effect on my doctors lately. They seem stumped on what to do. My chest doctor, my liver nurse, my surgeon and my gp, all say, tell me what you need and I will sort it. They rely on me these days to tell them when I need treatment, when I need meds and which ones. I know that I am the best expert on my own body, but do I trust myself to make these descisons.

Alas, if all goes well, I shouldnt be in London now until my next surgery at the end of January.

I did want to moan about rest days, but I shall save that for another blog. Arnt you all lucky

Dancing?

Lasts night random post.
You can probably guess, I had just gotten back from the twilight film premier.
It was 3am and I did feel rather odd coming into the hospital at that time of night. Alas the nurses were great and worked my treatments around for me.
I was also very proud of myself, as I ran all my nebs (which is a fair few at the minute) and disinfected my equipment both before I went out and once I got back. Go me!

Film was great though I wotn say any more  Though today, I have been exhausted so slept most of the day and still feel wiped out.

And tonight's escapeds?

I went out dancing (minus the dancing part. I cant/wont dance)
It was a friends 30th party so I went there for a couple of hours. Though I didnt drink due to IVs and I didnt stay late due to feeling a little dead. It was a little surreal putting heels on whilst I had a cannula in my arm, but luckily it was easy to hide.

I dont get out much, so when I do get the chance, I am not letting a little thing like hospital get in the way.

The picture is a bit lame as I dont have my cardi on nor my scarf, but you can see the outfit a bit.

Gotta love hospital bathrooms.

Havnt rolled my hair since I lost the red. Forgot how much it makes my arms burn.

I do love my shoes, just wish I could walk better in heels.

Oh, I also saw the drs on ward rounds today. Though my doc is off sick, I saw someone else on the team. Things are going ok so far, but we have decided to go till Monday with the IVs and revaluate then, with the hopes of discharge. I am happy enough with that. so so far so good.

nonsense.

I have been staring at the screen once again for the last 20 minutes, contemplating what to write.
How to up date, how to sumerise where I am up to.
But in truth, right now I dont know where I am.

What I do know, is that its  not even 10pm here and I am tucked up in bed. I have not been dressed all day and yet I feel worn out.

My last addmission showed me a lot. Where I thought I had strength, I dont. I lack the ability to stick up for myself and that leaves me unable to fight in the areas I need most right now.

Right now, I need to cling to people, I need people around me, to tell me things will be alright, to see through the facade and know that perhaps the unspoken is bigger than first thought.

Right now, each day is a battle. Although I am out of hospital at the minute, my health is still not complient.

In round up, I went to clinic last week struggling to breathe. Clinic addmitted me as they didnt know if it was infection in my throat or scar tissue. If it is infection, that is easy to clear with meds. If it is scar tissue, that becomes more complicated as it means that it will keep building and keep needing to be removed, until a point is reached when we cant keep up with removing it. Then things get more complex.

After a week of meds, the conclusion was drawn that, it is infection, but the infection is building up as I can not get the breathe to clear it due to the scar tissue. The scar tissue was removed and I was allowed to go home.

Upon getting home, I developed this extreme anxiety, that had no known cause. I was still on my pain meds and struggling to keep my eyes open, yet, I didnt want to go to sleep, I was to scared to sleep. I stayed awake until about 2am, but did eventually drift off despite my best efforts to stay awake.

That night, every half hour, I would wake, gasping for breathe, barley able to get the oxygen flowing through my lungs. I kept having to change position in hopes that my airway would give me some free flow. I gave up at 7am and got up.

Later that date, I had clinic with my chest consultant. He isnt happy with my chest or how much I am suffering with it. He basically said, you have 3 big seperate problems, but put the 3 together and you are in a right mess. Crappy lungs, immunsupressed  and a disagreeing trachea.

He wants to admit me. He wants to blast my lungs with some more drugs, get some physio input and monitor me a little more. He said he cant touch the trachea area, but wants to work as best as he can with it as he can see how much it is tiring me.

So I had to agree to be admitted for some more IVs, which I am now waiting for. I also need to keep my surgeon updated on how things are. The good news with this, is that my chest guy has agreed finally to have a port fitted in my chest. This is such a weight off my mind. Right now, IV meds have to be put through a needle fitted in my arms or legs. The needles are very difficult to be put in me now and most I have to wait for anestists to come fit them. Having a port, will mean no more needles, it will be mean a safe access point in emergency, it will mean not having to miss med doses when a needle can not be sited. It also means, that eventually I will be able to run the IV meds from home myself, and therefore avoiding hospital addmissions.

Huge step forward.

But right now, I can barley stay awake in the day, yet, unable to sleep of a night as my breathing likes to keep me awake. My lungs feel like they are on fire and I generally feel rough.

Now here is the hopefull part. Over the next week or so, things should improve. With a bit of luck, my throat issues at the minute, will just be swelling, it wont be scar tissue. Antibiotics will clear my lungs out and give me some energy again.

The thing I want to avoid most, is going to London next week. I need my throat to improve, as if i am still struggling I could well end up back in London, which I dont think my mind is up to keeping up with right now.

Half of this dosnt make sense. I have lost my focus writing. I wont delete it right now, this is just the stage of my mind wandering. I will however try to rephrase tomorrow perhaps.

I just need a sign, something to tell me that I dont need to go to London again, as that is my worst thought right now and I would rather stay home and recuperate.

Oh and I am slowly working on catching up with blogs, but I have difficulty keeping my eyes open, and so if your blog has more than 3 lines of text, then it may take me a little while longer.

ramble.

Why is it, that no matter how much I organise my wires, leads and tubes, they always manage to get tangled.
I have a pretty good system of the bits I need close to my bed, although the floor where the machines have to be kept looks a little more messy. My suction machine, is heavy, so has to be based on the floor, my humdifer has to be way below the level of my neck when I lie in bed, incase any water collects, to stop it pouring into my lungs. So thats 2 machines taking up floor space. But then there is my neb, which is huge, but cant be on the floor as the filters drawing air in would get clogged with dust. But, near my bed, I have my cords set like this.

Ignore all the junk. The humidifer has to be stored up high, to allow it to drain and dry, which is why it gets the top peg. But of a night, when I set it up, I always get go to connect up and find the wire has to no give. When I look down, there it is wrapped in pretty knots and braids with the other two cords.

On the news of my rash, it seems to have gone, except in a few very small patches. I wish I could say I was feeling better, but last night, was a hard night. Everytime I drifted off, I started coughing and choking myself awake. The coughing then annoyed my stomach and so I was in and out the loo and not much sleep occured.

Today has been chilled out day, with lots of sitting still, not even the energy really to make things. It gives me to much time to think. I have been reading the Hunger Games as distraction, but even that makes me over think. The rest of this entry is going to be ramble, so I suggest tunning out now.

I will try not to give away things out the book.
A lot of the time, all the characters, expect and accept the ones who have been through a bad experince, to have trouble dealing with it. Now what they have been through in the book, is a huge thing and I am not comparing mine to that, but there is so much of it I relate to. When you want to hold everything together to prove that you can, but sometimes its just out of your control. To be given the space in a way to be allowed to go crazy and come back from it. And I guess, for others to notice when you do go crazy and instead of judge, help and accept.

Why oh why does this not come out as elquontley as it does when it plays in my head.

I dont know. I know a lot of my mind is messed up, I understand why and I do accept it. Its kind of funny, that some of the worst memories I have, that set me back the most are often from ICU. That in itself is understandable. When there is so much uncertainty, so many treatments and procedures, yet death is never far away, be it from yourself or those in similer postions around the room. Its not unusuall to hear the alarms of someone machines going off, and know exactly what is about to happen. To watch, from a distance as people gather to sort out the alarms and keep the person there. You can escape it in ICU, the patients are at their most vulnerable and it takes so much work to keep each one going. more like an art than a science. In a place where all patients need the same sort of care, they all need to be seen and heard. And as a patient, you can usually hear and see most of what goes on.

Its worse again when you hear the alarms go off close to home, when you know they are your alarms. When you feel things that you know are not right. You try not to panic, to keep it together, but often it is those who rush to your side, that give the game away. The look on their faces as they stare at the monitors, each forming their plan, and you not knowing your fate. Not knowing if this scary bump will be the last, or if it will set you back weeks in your progress, or if it will just mean more pain, more treatments, more time.

Coming close to death, is something that I think that has to change you. It would be impossible to go through something like that and not come out feeling different. Maybe for the better, maybe for the worse, but change they will, and it is a change that will always effect you.

But, there is something far worse than ICU, a time and space, where you must pass. A place where you learn where your own skin is and how to be comfortable in it once again.That in itself can vary in length from a few hours to years. The place, the knowhere land, where you are well enough to not need subjecting to hospital treatment, yet in the place where you are not well enough to get on with things.That place that you never know what will come next, you dont know how long you will stop there or how you will get out. Away from the countinous beep of the machines next to you, reassuring you that things are fine.

In this place, nothing is set in stone. Things can change at a moments notice. Noone knows what to expect. Your mind tricks you, it takes time to remember how things should be. This waiting land, is harder than anything else I have ever experinced. Not knowing what are good signs and what are bad. Not knowing if things will get better or worse. Having to fight on, with no rhyme or reason. Just hoping each day will be better than the next.  This is where it is hardest. This, is what my new nightmares are made of. Stuck in Limbo. No way in, no way out.

This, is where crazy makes itself known. And your true test, comes to how well you cope with crazy, be it running away screaming, or embracing it will arms wide open. It will always be a test, one I hope I am able to maintain a good result in.

Hectic

This month has been a tough one, but this weekend has been a good one.

They finally said I could go home on Friday. My cultures came back clear, though I did spend a day struggling to keep anything down as the antibioitcs had messed with my stomach so much. Not a huge problem, but it did lead to me having to run our mid physio session to get to the loo quick enough. Which in turn led to my physio pestering me to drink some lucozade and such. But once the meds have stopped and I slept for anumber of hours, things have slowly began to improve.

So I was discharged from hospital about 1pm and by 5, I was shopping in London. YAY.
Got some makeup and such and then we had a quick bite to eat, but getting changed and going out for the night.

It was after 3 by the time we got home, but plenty of dancing assured we had a good time.

Saturday, was a rather sunny day and so after a rather slow start to the morning (yeah we are the cool kinda people who text each other of a morning even when we could just shout) So we headed off to  Oxford to meet some friends.

I do love oxford, the ultra modern high class society mingled in with such an old town. The cleanliness and general beauty of the town always takes my breathe away every time I see it. On a fair few occasions, I did have to reel my inner camera geekiness in and resist lining up the perfect shots.

The good thing about rambling across a town with a large group of people is that everybody walks slow and so I am able to continue conversation as I go.

It was fun and the weather did pay a large part towards that. We had drinks and sat out on the grass for a long period of time. Later we went for the traditional Oxford milkshake yum. Milkybar was my choice of poison this time. We also did the tradtional bens cookie stop and finished in the pub.

It was late by the time we got home and so today, we are still in our PJs.
So overall a good fun weekend has been had.
Yay.
And then tomorrow, is back to surgery, bright and early, that should be fun.

All Change.

Yup, I no longer have washed out blue hair with roots down to my ears. Its actually a normal colour, though I am not sure if I like it yet. Its nice, dont get me wrong and it looks better than it did, but I like my bright hair. However, it still seemed to be comming out a lot, so I didnt want to do anything harsh to it and so this shade is staying for a little while. Though, I may put a real red over the top of it at some point.

And guess what I did last night?!?!
Nope, I didnt spend the night in front of the tv like I usually do on a Saturday. I actully went out, in the night, with people my age woowoo. It was a friend of a friends birthday, so we to a local pub/club and had a few drinks and did a bit of dancing.

They were all very thoughtful and grabbed a table right by the dance floor and chair, so I could sit. I didnt sit that much to be fair, but I was able to sit and recharge during the songs I didnt like, and stand and kinda dance to the songs I did like. I even got on the dance floor at one point, but didnt stay long due to the smoke machine.

It was loads of fun though. Great to be mixing. I was more than apprehensive before going out, as I thought it would be awful, as I wouldnt be able to hear what they said to me and they wouldnt be able to hear me as I cant get my voice loud enough. But again, they were all thoughtful. My friend did the drinks orders and when talking to me, stood next to me right by my ear. Really good fun.

Its been a nice few days. I was sorting some stuff out to go in frames around my room as it needs brightening up a little. So, I have been routing through all my folders of pictures. They bring back lots of memories and I am once again reminded of the people I have around me and the sheer amount of fun I have had. So much so, I was spoilt for choice for a fair few pictures. I may post some of my frames up once they are done.

I think, I am settling into a pattern that is making things easier to deal with. I was orginally, trying to get out the house everyday, but I was finding myself struggling to cope with things or get things done that I needed to. But now, I am more so only going out maybe once or twice in the week and then once at weekends. I am coping much better, not feeling as drained all the time and having the time and energy to do some of the things that I want and need to do.

ouch

I have 3 big burns on my fingers, two of which have now blistered oops. Can you guess what I got for christmas from this haha. Yus a curling wand. They do make such pretty curls, but you dont get the sliilly little clip to hold the hair in, hence the burnt fingers. And they get super hot very quick, which is good as they hold the curl better, but not so good for your hands. My current straight hair.

And after a play with the wand.

I think that I need some practice, but its differnt.

Today has been a real lazy day. I got up feeling exhausted. Mum and Dad were going out, but I chose to stay at home. I was back on my bed by 1 and awoke when they came in at 4. oops. Still feel tired, yet not done anything. So off to bed for me. Hopefully, tomorrow I will have a little more energy.

Tracheal Stenosis

So you have probably heard me mention many times about my tracheal stenosis, but I dont think that I have ever explained what it is.

Tracheal stenosis is basically a narrowing of the airway (trachea) My main issue is subglottic stenosis, which is the region just underneath the vocal cords. It can occur for no reason, but this luckily dosnt happen that often. It can also be caused by a disease called Weggners or from trauma or chemicals. In my case, it is caused by prolonged ventilation and previous tracheal surgery. I was ventilated for abour 18 days using an endo tracheal tube (Normal tube that goes through the mouth) but eventually had a tracheostomy put in to make me more comfortable while ventilated. This was in for about 2 months before I managed to get rid of it and allow it to heal. About a week after it healed I developed a serious case of Pneumonia and had to have the trach put back in to allow ventilation again.

So what symptoms are associated with tracheal stenosis?
The severity of the symptoms depend upon how much of the airway is occluded, but basically anything that restricts your breathing.
So the main symptom is shortness of breath. There is also often a stridor present (like a whoosing noise when breathing, or noisy breathing.) College friends used to call me Darth Vader as they could hear me before they saw me. It can also cause difficult or laboured breathing, which can result in extreme tiredness. If the occlusion gets to bad, you can literally be fighting for each breath. Because you are not breathing as well, you can show signs of cyanosis (Which is a blueish tint to the skin, lips or nails) Because it irritates the airway, stenosis can often cause a lot of coughing.

Tracheal stenosis can be diagnosed in a few different ways depending upon your presenting symptoms and your medical history. Breathing tests, where you breathe out as much as you can into a machine, can often indicate that their is a restriction and how server it is, but they can not locate where the restriction is. X Rays, MRIs and CT scans can all show where the restriction is giving the surgeons a better idea where they are working, however it is difficult to know what the tissue is like using a scan.

Laryngoscopy and Bronchscopys are the best form of examining tracheal stenosis. They allow the surgeon to have a fully look at the area and take samples should they been needed. For me Bronchscopys became my life at one point, where I had 5 in one week.

Who looks after a tracheal stenosis patient.

Usually 98% of the time, you will be looked after by an ENT (Ear, nose & throat) doctor however you may also see other doctors too. I was first reviewed by a Chest doctor due to breathlessness and repeat infections and hospital admissions. After trying a few treatments and tests, he reffered me to the ENT doctor.

The ENT doctor did what they could, but the damage in my throat went fairly far down so they then refered me to a Thoracic doctor. The thoracic doctor tried a few things that didnt really help and so I was discharged for a while.

Things gradually got worse and I was sent back to the ENT doctor, who liased with the thoracic doctor and both went to theatre with me to work together. I am now cared for by these two doctors, but I am seeing a specialist in London in ENT.

What does stenosis feel like?

There is a little test you can do to try it yourself.
Get a piece of card and cut some holes in it. They should be about 2mm, 4mm, 6mm, 10mm and 12mm in diameter. Put your lips over a hole and blow out. This is what it would feel like if you have that level of stenosis. For those with stenosis, do the same activity starting with the largest hole. Once you feel resistence, that is your level of stenosis. I often describe it as trying to breath through a straw. Perhaps try getting a straw of about 4mm-6mm and put it in your mouth and plug your nose. Attempt walking around and getting up the stairs to see how it effects you. People without stenosis begin to feel resistence at about 8-10mm.

Subglottic Stenosis scale

You hear people talking about percentages in lung function which is how much of their lungs are useable, but with stenosis, its more about how much you can breathe at once. Subglottic stenosis is graded by the occlusion to the trachea.
*Grade 1 - Obstruction is less than 70%
*Grade 2 - Obstruction is 70-90%
*Grade 3 - Obstruction is greater than 90%
*Grade 4 - Full obstructed.

In the past year, I have gone from grade 1 to grade 3, where I am now. Without my trach, I would be breathing through less than 10% of my airway, which would be less than 2mm, hence why I have virtually no voice.


How is it treated?

Treatment will depend upon the level of stenosis and how it effects you.
If you hardly notice it day to day, I would advise not going for treatment

Providing you are not in a position where your airway is compromised (Where there is a chance it can quickly become fully obstructed) generally the surgeons will start with some laser surgery, which basically burns off the extra tissue that shouldnt be there. They may also use Dilation, which is a technique where they cut into some of the tissue, then blow a balloon type thing up to help expand the airway. These can all work in the short term but you will often require more.

The next stage is to try placing a stent into the airway. A stent is like a piece of material that expands and holds the sides of the trachea open. Stents, for most people can work long term with no problems.

I had a couple of laser surgeries on my trachea to remove the stenosis, but the area was so large, that my trachea became floppy and unsupported, meaning that it would not hold itself open. Therefore a stent was required to make sure the trachea did not collapse upon itself.

My body however, did not like the stents. As a for of fighting off the stent, my body tried to cover it with scar tissue, which once again blocked my trachea. The tissue was removed a couple of times, but kept coming back quicker each time, making my airway very unsafe, very quickly.

Therefore, the next treatment after a stent, is a tracheotomy. This is a tube place in the throat, that comes out just under the chin. It by passes the stenosis so avoids the danger of the airway completely blocking. However, trachs are not the best option long term. They have a high infection risk as well as having other risks and limitations such as the risk of water going down the tube.

The next stage of treatment is classed as open surgery and again varies depending on the level of damage. A tracheal resection can be performed. This is where the trachea is opened and the damaged rings removed. The two ends are then rejoined and stretched to create a full trachea. This is major surgery and involves a lot of recovery time. It might even be nesscary to have your chin stitched to your chest to prevent the trachea from moving whilst it heals. However, this kind of surgery has shown great results, with few complications. The downside to this surgery, is that generally, they can only remove upto 4cm of trachea in an average adult. (Last september, I had 5cm of damage, but it has since increased)

The other treatment option is tracheal reconstruction. This involves taking some cartilage from your ribs. The damaged tracheal rings are then broken, to have either one or two gaps in them. The rib cartilage is then used to fuse the gaps in the tracheal rings and therefore holding them open. This is a long and painful process requiring a few surgeries as time goes on to remove any scar tissue that may form. It is also not a good idea for idiopathic (No known cause) of stenosis as the stenosis can return fairly quickly.

Future advancements

There is currently a lot of research being put into tracheal transplants. This would involve putting a donors trachea into the patient, which can be tricky as it is a tissue which needs a full blood supply. Scientists have found ways in which they can strip the donor trachea of its cells and coat it in the patients cells, therefore tricking the patients body into thinking that it belongs their, so not to attack it, like would happen with a normal transplant.

London Free Hospital

So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.

Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.




Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.

My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.

So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)

So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.

Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.

Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.

He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.

Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.

He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.

And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.

Emotional Rollercoaster

It has been one crazy week on an emotional roller coaster.

First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.

It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.

Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.

Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.

Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.

Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.

And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.

I couldnt sleep last night.  Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.

I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.

Big step backwards

When I was first discharged from hospital after my transplant, I had to basically learn to walk again. Most of my muscles had wasted away with lying still and not moving for 3 months. After 3 months on a ventilator, even breathing on my own seemed a huge task. But once I started getting about, I swore that I would not go back to being like that. Spending most my time in a wheelchair, then on to a walker, upgrading to crutches. It was a long task, it took months, well more so years as I kept hitting set backs, like needing further surgery. But I did it.

When I was in ICU last month, as soon as I was awake, I started doing all my old physio exercises I could remember so that I didnt seize up. Within hours of getting the breathing tube out, I was sat up and sat out by the next day.

But today, was just to tiring. It was a simple shop, we only had 40 minutes till closing time. I ran my nebs sitting in the car as I was rattling without them. But walking from the car to the shop entrance I was gasping. I couldnt do it. So I agreed to use a wheelchair. This is a huge step back. It feels like I have done everything I can to avoid this, yet have ended up here just the same. Why did I bother to work for it?

The worst part is knowing that things might not get better. Sure I can go for this permeant tracheostomy, but the one the surgeon wants to put in will be a closed system so I still breathe through my mouth as opposed to my neck. But my throat is still going to be narrow, so I doubt it will make much difference. I need to speak to my surgeon, but I dont see him for another week. Wish it was tomorrow I was seeing him, but he is away. A week seems like a long time when every breath hurts.

Mum asked me what I wanted for christmas, I said jokingly a new throat please. She welled up and said if she could she would have by now. She tried talking to me about this trachy the other day but again she kept welling up. I couldnt discuss it.

In other news, I am being referred to a cardiologist. After the GP doubling my blood pressure meds, it hasnt even started to come down and she dosnt want to take chances while its so high. So theres someone else I have to go see. Dont know when thats going to come through. Feel like I am falling apart.

And this has taken twice as long to type. stupid tears. I wish I had the strength that others seem to have. The type that fight on bravely and courageously instead of being a whiner like me. Oh what I would give right now to paint a happy face on things. But its hard enough keeping that face there infront of family and college people, let alone when im alone.

Onwards we go

Today has been hard.
I am really bad at getting myself off the internet of a night and into bed. It seems once bed time starts ticking round, I remember all kinds that I have to do and as a result dont get to sleep till stupid o'clock. Last night it was about 1am. This would normally be fine, but I knew that i had to be up at 7:15 for college. Still I could cope with that. Except that yet again at 3 I woke up gasping as if my throat was closing. Sleepily sat up and set my nebuliser up and ran that through for about 20 minutes till I could breathe again and went back to sleep. Woke up again at 5:30 once again unable to breathe properly. It does clear pretty easy with a neb, but its the effort of waking up, plugging in the machine (Its on the other side of my double bed) and sitting there while it runs.

So I went to college, first lesson, so less than an hour since I had last ran my nebs. Went to ask a question as I was stuck with my virtual networking server and nothing came out. My voice completely died. This made it really hard to keep up with the lesson. I missed last weeks lesson as I that was when I was having my bronchoscopy so I had work to catch up on. But could I find out what work I needed to catch up on? no not really.

By second lesson, I was ready to go home. My breathing started to feel tight again. Changing classrooms, I stopped at the loo in between so I could sit down and get my breathe back. I managed to make it through all 3 of my lessons, but it was getting harder and harder. I was literally sucking the air into my lungs. It was starting to get scary, at one point I thought I was going to pass out and I couldnt cough anything up as my throat was to dry to shift anything. I started thinking about what would happen if I collapsed in college. I have no idea. None of the tutors are medically trained and I would feel so ashamed if anything like that happened.

Even my tutor comment on my breathing today. He kept asking me through the lesson if I was ok, to which I kept nodding. After the lesson he said told me that I sounded awful and that I should go home and rest. He also said he was proud of the way I was still carrying on with the course and coming in right after being discharged from hospital and stuff.

I slowly walked to my car, which was parked right next to the door. I was sucking in breath as best I could but it felt like my lungs where on fire and I had to sit still in the car for about 15 minutes while I regained my breath enough to drive.

I cant live like this. Its driving me nuts not being able to even walk between rooms. I emailed my surgeon last night. (remember what I said about always remembering around bed time that I had things to do, well it was kinda midnight) Well anyway, he got my email this morning and rang the house phone to speak to me. When he got no answer he started panicking incase I had arrested again. He phoned my mum at work and asked her why I wasnt answering the phone. She rang me to make sure I was ok and stuff.

So I havnt actually spoken to my surgeon, but he basically told mum that there is nothing he can do really as every time he does anything, even a scope, i get worse. He said that if I am really struggling then to phone the ward but he dosnt know what else to suggest. He is also out of the country next week so I need to try and make sure I dont get ill then. Dont think i would trust any of the other surgeons in the hospital as I have always been under the same one. Just have to try to preserver.

It would also appear that the Amlodipine has not started to work yet even after doubling the dose. I had to go for an ECG yesterday morning and my pulse then was 127. Taken the ECG to the doctors so I suppose I will find out the results of that on Thursday evening at my appointment. Also had to go for yet more blood tests, this time a fasting glucose and a hemoglobin. Again, will get the results on Thursday.

Im just so tired of everything at the moment. I have a ton of work to do for uni and I just cant concentrate on it. I wonder if my oxygen levels effect my concentration? Maybe, and I really hate to say this, but I am thinking about get the permeant tracheotomy. I cant live like this unable to move anywhere and feeling like im going to pass out whenever I do move. I really really dont want it. But it would beat being the way I am now. Oh well onwards we go I suppose, just need to try and stay positive. There are so many people who are worse off than me. Least things like my liver function and kidney function tests are all fine so the transplant centre are happy with me even if none of my other teams are. hmm.

back to the ward

Well I did end up in hospital, again!
I was feeling really breathless, so mum said why not go the walk in centre and get your oxygen saturations checked. i agreed to this, thinking if there fine then I have nothing to worry about and if there low, i can go look for treatment.

Well I got there and was taken through to triage and hooked upto the machine. The nurse looked at the numbers and said hang on I will be right back and went to get another nurse to help her. My pulse was 145. They took it mannual and said it was irregular. Listened to my chest to which they said it was clear. They then said they that they wouldnt be happy with me going home. They were going to send me to the royal, but I mentioned that I was on C ward in the cardio hospital. they didnt know how to have me addmitted to there as there is no A&E.

So they rang the ward, who put them thruogh to my consulatants registrar who said he would admit me. 5 minutes later the hospital phoned back and said they had a bed for me. So i go to leave and the staff at the walk in then say there not happy for me to go in my condition with my mum. they wanted to phone an ambulance to take me incase there were any problems on the way down there. After much persuasion I managed to talk them out of it on the condition that I went straight there and used a wheel chair to get from the car to the ward.

So that was me stuck in the ward yet again. didnt get any sleep as i was in the main ward where people where in and out all night. saw my surgeon the next morning and told him what happened. He said he would take me down for another broncoscopy while I was in so he could check everything and then I could go home.

Went down for my bronc at 4 and came back at 5. Asked the nurse if i could still go home that night, she said she doubted it, but could go home early next morning. the surgeon came to the ward to see me and again confirmed that I could go home first thing the next morning. I looked at him and said can I go tonight please. he thought for a moment,t hen said, you do live right opposite the hospital, so I supposse so as long as you come straight back if there are any problems.

So by 8 i was home again. YAY.
Thought i was going to get readdmitted though. Went to sleep about 11 but at 3am, I woke struggeling to breathe. It once again felt like i was breathing thruogh a straw. I couldnt cough as my throat was so sore and dry. I spent about an hour trying to clear it. in the end I decidied that i would plug my nebulizer in give it one go and if it didnt work then I would go wake up my parents an go back the hospital. Luckily, by the time I ran one neb through I was able to cough it clear. Still scary though.

So i have woken up this morning, feeling crap, too hot, too cold, sore throat, headache, aching all over. feel really rough. Suppossed to be going for a blood test on the way home too. Was suppossed to get it yesterday but of course being on the ward meant I couldnt. I just need to sleep, but im in college now. Not that it is doing me any good being in here, I cant concentrate on anything and so im just traweling the web.

In other news Peters trial got adjourned till Janurary. I am considering writting to him if i can, not sure yet. Bloody january though.

Oh well enough moaning for one post.

Long way down

urgh I think I am coming down with something.
I slept in till 12 today and by 7 I was falling asleep on the sofa. IIt not like I have done anything today. I had dinner, showered and sat down trying to start my networking assignment. I kept getting distracted though and so didnt get very much done. I will attempt to do more tomorrow.

Feeling fairly low tonight to be honest. Lots of urges to cut my arms. Of course, I wont allow myself to cut my arms, cant risk more scars, there are already too many on my arms and I hate the way people look at them. Especially doctors when I get my blood pressure done or the phlebotomist when they draw blood. Someone male nurse asked me what the scars where off last time I was in ICU. I just looked at him an said Self Harm. He kinda gave me an odd look and went ok and walked off. It was actully fairly amusing to see his reaction.

Im resisting urges to go look at pictures of self harm. When im in this type of mood I often find myself looking at pictures, comparing my level of damage to what others do. I would say I cut my legs fairly deep to most people, but my arms are pretty clean. I dont know what it is, but slit wrists just look so pretty.

I dont know if its the risk to life, the blood, the wound what, I dont know they just look good to me. ha with a mind set like this I really shouldnt be coming of the psych meds. But I dont get a choice in that do I. Of course my Blood pressure is more important. Part of me is saying good to coming off them, to see how low I can get again, see if I have the courage this time to end it all properly. To gain some new decent scars as mine are all fading. But I also know that it would mess up uni again. Not to mention I dont think my family would stand by me to fall apart again.

Ive done the whole psych ward thing, I dont need to do it again. Oh well. See the doc a week on Friday, see what she says.