Baby food

I have been staring at the screen for 10 minutes wondering how to word this entry or how to start it. I have no idea what my head is telling me today.

There has been good aspects to the last few days that I have enjoyed, there have been frustrating ones when I wish I had my voice to speak up or I had the courage to stand up to people and voice my opinions. Mixed in with all this there is an underlying fear and heck of a lot of denial. My brain feels like baby food, all differnt flavors, colors consistencies all mixed together. All going on together and yet all the tastes are there.

The doctors have written me up for painkillers again. Volterol and Codiene. I asked for painkillers they asked why. I said (yet again) that I am coughing that much that every morning I wake with so much pain in my chest, back and shoulders. They didnt bother examining why suddenly 2 weeks after surgery I am getting such pain or having such a bad cough, they just wrote up the meds.

Yesterday a friend of mine was admitted to hospital. Its been a long time coming, but that dosnt make it any easier. I just really hope that this admission actually helps her and gets her the support she needs to get through this rough patch and out the other side. But of course, I still wish there was more I could do. Find the magic words that make everything better. I hate to see others suffering, especially sweet, lovely nice people like her.

The nurses are being nicer to me now. I think they see me as the easy patient now as there is very little for them to do. A lot of the nurses and some of the doctors even wave on the way past or have short conversations whilst on the go. But I still get pissed off easily. One nurse who was being nice to me yesterday
left me very annoyed at meal times. My friend Cam was visiting as she has been everyday since my mum had to go home. It breaks up the day and allows me to socialize. They were bringing dinners round and in my bay at the time there was only me and one other girl in the bed opposite me (we shall call her moaner.)

My friend got asked to leave the bay whilst meals were being served, which ok, is fair enough if thats who the ward operates (though its the first time she has ever been asked to) but moaner had 2 people with her and neither of them got asked to leave!! To me that just seems unfair.

But anyway, we christened her moaner as that is basically what she is. She had surgery the day before so it wasnt even like it was that day. But al you could hear was moaning and whining and she even called the nurse at one point to pour her a glass of water, which was pathetic as I had heard her opening the drawers in her unit which was further away than the water. She was complaining that she didnt have enough pain relief even though she looked stoned and kept falling asleep mid conversation. She has told the nurses she is in to much pain to eat or do anything, but when no one is around all you can hear is the rustling of sweet and crisp papers. Gah some people annoy me. I do feel for those who have been to surgery with general medical conditions, but hers is technically self inflicted and is cosmetic. Oh well she has been told she is getting discharged on Sunday, but I bet she hangs around till at least Tuesday.

This morning has probably been the most mixed emotions. The last few days, I have found that I have been getting more breathless. In true Kim style, I have been ignoring it. You never know if you ignore it long enough it might go away :) But anyway, I didnt sleep last night as I kept waking up gasping. At one point I sat bolt upright for about 20 minutes as I felt like I literally had to suck the air into my lungs. I contemplated calling a nurse, but in the end settled for putting some saline down my throat having a good cough and going back to sleep.

I had weird reams when I did sleep to. Something about I had been hacking and coding something to do illegal things with it. However, I had managed to unleash a virus type of thing, that spread to humans. :/ Those who had it, basically had to be killed, including my elderly neighbors, which was sad. The government thought they had control of it then and al the hyper died down. But then it suddenly came back and infected nearly everyone. There was one building left where they thought it hadnt infected and they were working on securing it, when suddenly one person started showing symptoms and the whole building had it and yeah. Very odd.

So this morning, I was meeting a friend, so I got up early to run a load of nebs in hope of clearing my chest. A few days ago, I could potter around the bay the bay and such without getting too out of breath. This morning though, I bent to get my stuff out the locker which took about 2 mins and I literally had to sit down for another 5 minutes to catch my breathe and stop going dizzy. Even moving from one side of the bed to the other, I would feel I couldnt breathe. I coudlnt get the air in and out of my lungs quick enough. When I got finished in the bathroom, I noticed that my nails had a blue tinge to them. Again, I chopped it down to being psychosomatic and thought perhaps I am just whining as I have had a bad night and I am getting fed up. But my friend commented this morning that she has noticed that I am getting more breathless the last few days. Frankly this scares the hell out of me.

If my breathing is getting worse while I still have the stent and trach in, what hope do I have next week when it comes out. If I am getting more breathless, it has to be either below the trach or my lungs. Neither of which are a good sign. My lungs are crap, but not that crap and it cant be an infection as my obs are all stable.

I am not sure where this leaves me. I can tell the nurses but the first thing they are going to do is look at my oxygen saturations which are fine. But my sats are always fine. I mean I went into respiratory arrest and still had 100% sats. I hate this feeling of uncertainty and I am holding back the tears. This surgery needs to work! And all the signs are pointing towards it not having worked. I have been positive and I have done everything they have told me. I have followed the routines, I have rested, I have pushed myself and I am trying to remain mobile, but its so frustrating when your body dosnt agree.

That being said, this morning, I felt as normal as I have felt for a very long time. I was meeting a friend for breakfast. Some people flourish with routines, but not me, I feel much better without a routine and with different and spontaneous things. So we decide to go for breakfast in the hospital. I got up and washed and kinda styled my hair as best I can without gel. Then we went for breakfast. It felt good, kinda normal, kinda what you see people doing in films. Getting up and ready of a morning, meeting for breakfast and a gossip, then going seperate ways about your own daily tasks. Yes, mine did start on a downer with my breathing and the rest of my day will be spent sleeping to recover, but for that hour, it felt good, I felt normal.

Its strange how you can feel so crap yet do something to feel good. The crap dosnt vanish of course, but for a moment its not at the forefront of your mind. Its not defing you and who you are and what you are able to do. I dont ever want to be defined by an illness, but it gets so hard not to be sometimes.

Change of pace

Ah where did I leave off.

So I arrived at Charing cross, feeling rather under the weather. I was seriously low on my painkillers so things were begining to ache. I spent the the first 20 mins there in the bathroom clutching my stomach and trying to regulate my breathing as it was hurting my rib to do the whole deep breathing thing.

Mum and dad had to go virtually right away as by this point it was 10pm, everyone in the bay was asleep and they still had to find their way to the tube and then home. I had plans to just curl up in bed and sleep.

The admitting nurse wanted me to take my meds, but they were not prescirbed yet, so I had to self medicate. At this point I had only done soft food and no tablets down my throat. Because I was self medicating, I had to swallow them rather than use my NG tube as I had been the last couple of days. Boy that was fun. Nearly everyone got stuck in my throat. And I gave up on a couple of the tablets as it wasnt worth the hassle.

I didnt know anything about the trach tube I had in place. I assumed as it was stitched into my neck, it was going to be a single piece one like I had when I first got my normal trach. I started struggling to breathe. Really felt like I was gasping. I told the nurse, who said, ok I will come sort you in a minute, then offered the rest of the ward a cup of tea and went and made it.

I was literally crying. I kept thinking any minute now I am going to go into respiratory arrest again. It was exhausting. Eventually he suctioned me out, which was a nasty experince too. He was down to long, it felt like I literally had no air in my body. The doctor came and admitted me. By admitting me I mean signed the drug card. They didnt bother to come speak to me or anything. But at least I was able to get on top of my pain relief.

As I lay in bed, hearng aids out, one headphone is as I sleep and music on low, I could a faint car alarm outside the window (Bear in mind this ward is on the 10th floor) This alarm over the next hour was joined many times by sirens, horns and general traffic. I literally cried myself to sleep wondering what on earth I had let myself in for.

The next few days kinda passed in a haze. Mainly trying to manage my pain medications and levels so I was comfortable enough to breathe, but not being asleep permanently. I experimented with food and was able to eat. I still missed my usual hospital and got fairly narky a few times.

I dont know if its because I am cautious with things due to my transplant, or if its my nurse training or if its just spending so much time in hospital. But I have high expectations of the medical staff looking after me. The nurses here? Nope, they came no where close. The majority of the nurses didnt bother to try and listen to what you were asking. At one point I asked if I could go the shop on the ground floor. The nurse looked at me, said no and walked off. No, sorry about that, or an explantation about why or even an offer to help me get something if I needed it. Just no and she was gone again.

The staff would be doing obs on the ward, and put on a pair of gloves to do them, but wouldnt change them all the way around they bay of 4 patients. I was bored so I read my charts. On them was marked down that I had had my bowels open everyday. How on earth they found that out I dont know as they didnt ask and as I was on morphine, I hadnt had them open. My temperture was marked down on a fair few occasions yet, they must have heat sensors built into their eyes, as no thermometer came near me.

One nurse, asked me if I could swallow my tablets ok (this was after a couple of days) I said yes, she then looked at me and said, no you cant and crushed them all into a powder for me to take. This included a long release one that was no use out of its shell. A sweet fell on the floor on the first day I was there and went under the bed. I forgot about getting, it was finally spotted 3 days later. good cleaning huh.

The nursing skills here leave a lot to be desired. A couple of times I have had dressings changed, only to have them fall off or be to wet within an hour. Glad I had my own dressing box here and so I was able to change it myself. Think they get the idea now that I am pretty much self caring. I will do my own nebs, suction, dressings etc if they just leave me to it.

Its the other patients I feel bad for. The ones who cant do it themselves. The lady opposite, was woken by a shock when a nurse suddenly stuck a needle in her arm without waking her first. About 10 minutes later the nurse informed the whole ward that the old lady had soiled the bed. About 30 minutes after that the ladys tea cam. Had she been cleaned up? nope. Her tea sat there for about 20 mins so it was cold when she got it, and still she wasnt cleaned up.

She was covered in it by this time and was sitting shivering as she was cold. In the end we couldnt watch any longer and my mum went and asked a nurse if she could at least have a clean blanket so she wouldnt be cold. About 10 minutes after that they came to clean her. So she was sitting like that for nearly 3 hours.

urgh it does my head in. If you are going to go into a career like nursing, then you need to pay attention to all the small caring details. Its not hard and it makes such a huge differnce. In fact it can save lives with the whole hygiene thing.

I miss my old team and my clean hospital.

I was at my wits end after a couple of days. This is what I wrote then.

It's hard. Harder than I was expecting

3 weeks in hospital then more surgery. 

Then what if it dosnt work. I can't live like this. 

It comes back to when is medicine too much. 

I spent time building both my plysical and mental health up. But it's not going to be enough to last the duration. 

Need to treat my body kind. Get it through this and on to better things. 

coincidence and rituals

So, for the past 7 years I have kept my eyes open for someone who might be in a similar position medically as I am. Since my breathing got really bad a year ago, I have increased the searched, with little luck. I had found people who had the same sort of thing, but most where in America where the treatments are so differnt. I did consider working my butt off and doing some fundraising to travel to America for treatment, but it was always going to be a last option as if I was going to get people to donate money, I would rather more people than just me benefited from it.

The other problem with finding others the same, was that most people has a small section of stenosis (narrowing) which was easier repaired. Where as mine is a much longer section and so it cant just be cut out.

However, in the last couple of days this has changed. Firstly, I came across a male, who had stenosis and had had the surgery I am booked in for next week. After som chatting I discovered he had been under my ENT consultant in my local hospital and that he lived not far from me. Well, I became slightly hyper that I had discovered someone in the UK that knew the same surgeons and procedures.

Within 24 hours after that, I got another contact. This time a lady, who again has gone through all the surgery that I am down for next week. After a short while we got talking about hospitals. Turns out she is under the same consultant and hospital that I am in London. And even more strange, she is being admitted to the same ward as me on the same day next week!! How weird is that?!?!

After all this time, it feels so good to have someone to talk about this to who knows exactly what is going on. We have only spoken a little, but its just strange, she knows what I am thinking half the time without me saying it. We were talking about getting scared when you begin to feel more breathless, which got onto talking about how quick you can get ill and end up in respiratory arrest. She mentioned that she has nightmares about that from experience. I was like wow, I have never spoken to anyone else before that has gone through arrest, never mind experiencing the same things. Some of my worst flashbacks and panic attacks are relating to it.

But to be able to talk procedures, medication, doctors and generally just living things and knowing that they know exactly what you mean. It is what I have been searching for for so long.

In other news, but girly, but I got period today. Normally, I dont care about things like this, but when faced with surgery, it is one of my main concerns. Nothing worse than going to theatre and waking up with something other than what you put down there. Or else to end up needing a catherter or arterial line. My wrist arteries are dead so they always end up in my groin. When they are taken out, someone has to press on it for like 10 mins, again not nice. But I dont have to stress about any of that this time.

I do still have all my own little rituals before surgery of course though. Shave everywhere lol, I never feel like shaving when I am ill, and again, when you end up getting tons of tests such as ECGs and new lines sited then it is a little easier if your not worrying about looking scruffy.

Then comes things like trimming toe nails, finger nails and dyeing hair. Dont know when I will next be able to lean over the bath far enough to rinse bleach off my hair without getting it in my eyes. As for fingernails, morphine makes me itch like crazy and due to my liver they dont like giving me many histamines to take the itch away. If I had long nails, I think I may rip my skin off.

Then I have my dilemma of what PJs to take. They seem to have been on offer everywhere recntly so I have a load of new ones, but I also have a load of old favorite comfy ones, such as my cat in the hat tshirt that I love  and my sponge bob top too. But they are all washed out and faded and kinda holey now.

And then comes the dilemma of entertainment. I cant see me getting very much into things, so I dont want to take loads with me. The laptop of course is going and I have my internet on that. Even if I am not upto it, it may entertain mum and is good for research should they spirng anything on me as well as keeping in touch with people and of course my library of DVDs and series on it. (I am in the process of getting season 2 of Nurse Jackie *squeeee*) Then there will be a collection of magazines for when I cant concentrate and just want something that dosnt need focus and my ipod as I dont sleep well without it.

But the biggest descion of all will be what books to take. I will be taking at least one true blood with me, but I have a few other books on my to read list. I keep meaning to read Lord of the Rings, but then if I cant get into it due to meds or whatever then it may put me off for life ha. I also have 3 other books sitting here that I want to read. They are;
*Lucky by Alice Sebold (She wrote Lovley Bones)

In a memoir hailed for its searing candor and wit, Alice Sebold reveals how her life was utterly transformed when, as an eighteen-year-old college freshman, she was brutally raped and beaten in a park near campus. What propels this chronicle of her recovery is Sebold's indomitable spirit - as she struggles for understanding ("After telling the hard facts to anyone, from lover to friend, I have changed in their eyes"); as her dazed family and friends sometimes bungle their efforts to provide comfort and support; and as, ultimately, she triumphs, managing through grit and coincidence to help secure her attacker's arrest and conviction. In a narrative by turns disturbing, thrilling, and inspiring, Alice Sebold illuminates the experience of trauma victims even as she imparts wisdom profoundly hard-won: "You save yourself or you remain unsaved."

*A walk to Remember by Nicholas Spark (He wrote Dear John, the notebook and the last song)

The last person Landon thought he would fall for was Jamie Sullivan, daughter of the town's Baptist minister. A quiet girl, Jamie seemed content living in a world apart from the other teens. She took care of her widowed father, rescued hurt animals and volunteered at the local orphanage. Landon would never have dreamed of asking her out, but a twist of fate threw them together when he found himself without a partner for the school dance. In the months that followed, Landon discovered truths that most people take a lifetime to learn - about the joy of giving, the pain of loss and, most of all, the transforming nature of love. Being with Jamie would show him the depths of the human heart and lead him to a decision so stunning it would send him irrevocably on the road to manhood ...

*I'll be there for you by Louise Candish

Hannah hugged her sister tightly. 'I know you don't trust life any more. But you've still got to live it...and so do I.' Hannah and Juliet Goodwin have been best friends since childhood, but when Juliet's boyfriend Luke is killed just as Hannah marries the affluent Michael, the divide between the two sisters is suddenly too painful to bear. While Hannah prepares for the birth of her first child, Juliet begins to neglect her job, her health, and all those who love her the most. Hannah is the last person she'd appeal to for help. But then she finds herself drawn into a secret betrayal that threatens to destroy Hannah's happiness before she even has a chance to enjoy it ...

Hmm descions desisions

I am at the point now, where I just want to get on with this and be done with it. I have done the fear thing and the anticipation. I'm done with plans and doubts. My mind is made up on it all and my brain has quietly accepted it. But I am a doing person not a sitting around waiting person. The sit around and wait I can do, if its recovering or I feel I am getting some place, but at the moment I am sitting still, waiting for my breathing to get worse, monitoring things, managing wounds and infection, medication and therapies. I am beyond exhausted.

I am getting through the day and then crashing. Like today, I managed my appointment, stopped at one shop with my mum got home and I just crashed out. I felt so exhausted it was even too much effort to speak, I just felt like I hadnt slept in a week. I had also that morning slept through 2 phone calls and 3 lots of alarm clocks.

But tomorrow is a new day and we begin again. And every night brings me a step closer to the surgery that might change everything.

Medication time and sleep I think.
ha, nebuliser sessions give me time to keep my blog upto date anyway.

Frustrated Part 2

Have I mentioned recently how much I hate that stupid trachy nurse at the royal? oh I have, darn it, Im going to re-mention it anyway as I saw her today and she has aggravated me all over again.

So I saw her again today (wow is it really a month since then) as well as my district nurse (dn) as my DN wanted to do her first tube change under supervision. Since I last saw her, 2 different ENT consultants have looked down my throat and both have exclaimed at how red and inflamed it is and they are going to investigate. We mentioned this to her and she just shrugged it off, said most patients with trachs have that stop worrying. Im pretty sure if it was a normal level, the consultants would have maybe, i dont know, been aware of it? Mentioned it? Not wanted to run further tests on it? But of course she knows best.

Asked her about getting portable equipment to take on holiday with me such as a nebulizer and suction. She said, oh I wouldnt know, Trach patients dont need all that. Oh really? I must go and tell those consultants that have stressed to me how important it is to use both, that they are wrong, I dont need them. If I dont use them, I spend most the night coughing and chocking and I spend the day gasping for breath, till infection hits in and knocks me out.

I also mentioned about the tube sitting at an awkward angle. After repeating myself 3 times, she said it was nothing to worry about, I just glanced at my mum in a kinda 'surprise surprise' look. So she had a look and said yes it is sitting wrong. I asked her why this was, she didnt know, but I shouldnt worry about it. I suggested maybe it was being pushed into a weird angle by my stenosis coming back. She agreed that it probably was, but not to worry about it. Its easy for her to say that, dont suppose she has ever experienced her airway cutting her oxygen off from her lungs has she? I mean maybe I am over reacting on this, but I think given the amount of times I have been rushed to theatre, the amount of times I have had to be resuscitated on the ward and the amount of time spent in ICU due to my stenosis cutting off my oxygen, that worrying is a fairly rational thing, that would perhaps respond better to some reassurance rather than a shrug? I mean, what if the stenosis carried on past the end of the tube? What if it pushes the tube so much that it makes future changes harder?I know I shouldnt freak out over this but sometimes I cant help it.

There where a couple of things we asked her, and she either didnt know or pretty much said I was silly for needing it. She mentioned about me eventually learning to do my own tube changes. I just looked at her (I was completely peeved off by this point) so I just said, with a bit of luck, I wont have it that long. Mum laughed, I shrugged and just said, I hate the trach, I hate the appointments that go with it, if I can get rid of it anyway at all, then I will. She kinda looked the other way then and we walked out.

Least fingers crossed I shouldnt have to see her again now that the DN can do the tube change.
I probably sound like an arrogant spoilt brat when I talk like this. Im not, really im not. Ive done all the hospital admissions, Ive done all the surgery, the research, the conferences. Doctors talk to me properly, they explain things throughly and they take into consideration that I want to know what is going on, that I know what they are talking about, I know the jargon and the reasons behind things.

Since my transplant, I have been taught to question everything. What they do, why, what medications they give me and why, the risks and benefits of everything and if there are any better ways to get what I need. I was taught that from ICU. They said, a lot of hospital staff are dumb. Learn the stuff that you have to avoid, learn your allergies, learn what you need to stay healthy. And question everything that is given to you to make sure it is safe.

And that has come into play so many times. I have been prescribe anti biotics that have already destroyed my hearing and ones that effect my immunosuppressant levels and ones that can knock my liver off. But worse than that, I have literally stopped staff from putting a medication in me when they have been stood next to my bed with the needle about to put it in. I am severely allergic to Heprin and Clexane. Under no circumstances am I to have this medication. If I do, it appears to work normal for the first few hours, but then my platelets suddenly drop and I bleed out of every orifice (Which is rather scary, I actully said goodbye to my mum when this happened) So they have to pump you with blood to replace what you are losing, but then my system goes nuts on the platelets and creates tons and tons of blood clots everywhere. Basically if given Heparin, within 3 days, I will be gone. Last time they gave me a tiny (like 2ml or something) of Clexane (which is much much weaker than heparin) and I bled out for 2 days and resulted in having a blood clot in my jugular vein. Hence why if I ever have to have a central line, it goes in the right of my neck not the left as my jugular is destroyed.

And even though I wear 2 red allergy bands, its written on my notes and drug card, people still insist on giving me it. Its standard procedure to use it for flushing lines and such with. So questioning is good.

But the nurse speaks to me like im some senial 80 year old who dosnt even know what year it is.
Just urgh.

two steps forward, one step back.

Or is that one step forward and two back. *shrugs*

So, im beginning to get a little bit excited at the prospect of Monday. Tickets are booked. Train leaves town at 9:48am and gets into London at 12. (cost bloody £52 each though stupid train) Then coming back we leave london (Euston. Never been that station before)  at 9pm and get home at 11:30pm. (that was only £10 for 2 tickets yay)

The appointment is 2:40 I think (need to check that) and the nearest station is kinds cross and then a short walk. hmm what to do with all the other time. Obviously get food, but where. hmm might take my mum to Covent Garden after the appointment to get some tea and a nose around the shops. Ill have to have a think and plan somewhere on route for dinner. eeps I cant wait.

Then comes the descsion. Take my small crappy handheld camera or my big proper camera. I have to take all my meds in there original boxes so I suppose I am going to have to do with a back pack so might as well take my big one. Meds are going to take up enough space, wonder if I can be a real tourist and take my tripod too.

Anyway, thats my positive bit.

So my surgeon said he would send me a copy of the refferal let that he wrote so that I could chase it up. Well, I got this today and me being me, I was egar to open it and read all the gory details. I have this thing when I like to compare to others, suppose its in a way of recognizing that Im not actually lying. I have this huge fear of going to the doctors with something and them telling me I am lying about it and they dont believe me. Even after having a transplant, I was scared my doc wouldnt believe that I had needed it.

So anyway, I was reading it and found it intresting to hear about the different sizes of stenosis I have had and the types of stents they have tried. I was happily reading it until I reached:

This patient has difficult venous access due to server cushings syndrome and obesity.

Ok, so I knew I had bad access asI had to virtually always have hickman or central lines in but was told it was due to my veins being accessed so much that they had collapsed. And of course I knew I was obese. But I had no idea about cushings. Why wasnt it mentioned. I knew the very basics about it, that it causes psych problems and is basically to much cortisol (a steroid) in the blood and that it is a very rare disease.

A quick look on google tells me that it can cause weight gain, tiredness, osteoporosis, and server mood swings that can often present as a nervous breakdown. So is this what is causing my depression? Could this be why I couldnt cope a while back and ended up an a psych ward? Is this why I sleep all the time and have no energy? Could it all be down to this disorder?

So I looked at causes, which kinda unnerved me. The main causes are tumors, either cancerous or begnine, well I know my anti rejection meds can make me more prone to cancers, but I thought the main types where ovarian, cervical and skin, but my mind is in overdrive.

So I go on to read a little more. First they have to find the cause EG: where the tumor is, its most likely on the pitutry gland, which is in your skull. It is often removed, by drilling into your skull through your nose or gums and remove the tumor.It maybe nesscary to have a skin graft after the op. You may also require chemo or radio therapy. Plus you may also need steroids for life.

Tablets for life I can deal with, god knows im on enough of them already. But all the other treatments? Could I really handle them? Would I really need them? The way he wrote server cushings, kinda makes me think that I will need treatment. But I still have to question why I wasnt told about it? And how they found out I have it. The only way I can think of would either be bloods or a 24 hour urine last time I was sedated in ICU.

I dont know, I have so many questions about it and no one I can really ask any time in the immediate future. So my head will just keep exploring the possibilities and looking for correlations.

I just really hope it dosnt interffer with this appointment on Monday. You know, if they turn around and say, oh get that sorted and then come back to us, I'm not sure what I would feel then. Suppose only time will tell.

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.

Living life breathlessly

Well there hasnt been much going on today, but what has occurred has been pretty monotonous.
I woke up late but mum had done breakfast so I went straight down to eat and dad was waiting to go out so I went and got ready quick. I was already a little rattly but decided to go with just one nebuliser as they take about 15 mins each to run.

Well that was a mistake. While out I had to walk up this street, it slopped a little upwards and by the time i got to the top, not only was I ready to pass out, but you could hear my throat ratteling a mile off. Coughed my guts up on the way home and went straight in to run a neb.

Which was fine then till about 2 hours later at tea time, when I started really ratteling. Taking a breath in was hard, but tea had just been put out so I endured it. Took me forever to eat it and it was cold by the time I got my breath back enough from walking from the kitchen to actually try to eat it.

Anyway, in the course of today, I have so far had to run 6 nebuliser treatments of hypertonic saline. This is like a salt solution that coats your mucus and supposedly makes it easier to cough up. It tastes foul (think drinking sea water) and burns your throat when you cough. So overall not very pleasant and not something you want to have to be doing all the time during the day.

You see I have this disorder known as Tracheal Stenosis. Which is basically a narrowing of the airways causing me to have noisey and difficult breathing. I get out of breath a lot easier than a person without it would. When I was 16 I was ventilated for about 3 months and had to have two tracheotomies. This is what caused the narrowing.

A few weeks ago, my ENT surgeon and my Thoracic surgeon decided to take me to theater to monitor my stenosis. They discovered that it had in fact worsened, so while there, they tried to widen the area, I think they used laser but im not sure (I now know that laser is horrible for stenosis but there you go). Anyway, they removed that much that my airway collapsed, so they had to put a stent in (like a piece of tubing to keep it open.) Though they were not happy with the stent as it was the wrong size, but they wnted my throat to have time to heal before taking me back to theater. I spent the night in ICU and the following week in hospital.

I was discharged for 3 weeks, where my breathing was worse than when i went in and I was put on a pretty high dose of steroids to control the inflammation. Both surgeons where present when I went back for the stent to be changed, I was then transferred to HDU for the night and on to a normal ward the next day. Im immunosuppressed (due to a transplant) so I had to have a side room, which was better anyway as I prefer my own space.

I was only meant to be in for a couple of days, but my breathing was not improving and I was producing a lot of gunk on my throat and so every time i took a breath a horrible rattling sound could be heard. One morning at about 5:30am, I called for the nurse as I was having a really struggle getting my breath. She said I was due my IV steroids so would try that and see if it helped.

Now the problem was, the nurse wasnt a very good nurse, spoke very little english and was generally bad (over the course of my stay she gave me the wrong meds twice and mixed my nebs that have to be done separate as well as other numerous little things) Anyway, with IVs your supposed to flush the IV first to make sure that it is still working, then put them medication through and then flush it again. (I did a couple of years training to be a nurse) But this nurse just put the medication through, then flushed it. The medication itself stings to go in, but im sure that the IV wasnt in right, it didnt look like it was. When I said to her i dont think thats in she just said, well it went through without hassle and then she walked away.

So I gave the IV an hour to work and was still struggling to breathe and it was getting worse not better, so I rang for the nurse again. This time she hooked me up to a sats monitor (A light that goes on your finger to tell you how much oxygen is in your blood as well as your pulse rate.) My pulse was a little high at 130 but my sats where still showing up as 100% (the best you can get). She then left the room and didnt come back to check on me at all for the rest of her shift. (I have a massive fear of being a hassle to anyone and so I dont tell people im struggling unless I really am struggling. And the way this nurse acted, made me feel like I was a a hassle which was making me feel worse.)

Anyway, once the day staff came on, I was starting to get pretty tired and my pulse had gone upto 140. I eventually bit the bullet and rang for the nurse again. She said that I would be reviewed on ward rounds (in about an hour) and then it would be upto the surgeon on what he wanted to do. She could see I was struggling, and could probably hear it a mile off so she decided to run some saline (water) nebs through hoping it would help ease my breathing.

I managed to hold on till about 9 O'clock. They bought me breakfast earlier and although I was starving, I only managed two mouthfuls before I thought I was going to pass out. I was so tired and I knew things were not looking very good as I was using my accessory muscles (stomach muscles) to breathe which isnt a good sign. It was ike breathing through a straw. Just couldnt get enough in and unless I sucked really hard I could only get air into the tops of my lungs. Feeling so exhausted I leaned back n my pillows, my pulse was reading 180 at this point.

Thats the last thing I remember. From what I can gather at that point I must have passed out. I went into respiratory arrest (stopped breathing.) Luckily the surgeon was just on his way into my room and he was able to set off the arrest alarms. The team managed to revive me, but I have very poor veins and as said earlier my current IV had blocked. So they where trying to put another one in. From what the nurses said, once they revived me, I went pretty wild, mix of being scared and lack of oxygen. So I was thrashing around a lot and needed to be restrained. They eventually got a needle in and were able to sedate me and control the situation better. I was taken to the operating room, where they found that my secretions had completely blocked the stent making it impossible to breathe.

I woke up two days later in ICU hooked up to a ventilator with tubes an wires everywhere. My first memory was my surgeon standing at the end of my bed telling me I had given him a scare. Mum and Dad came to see me later that day, where I spent the whole time complaining, well as much as you can complain when you have at tube down your throat, about having a catheter (tube in your bladder) in and having a central line (big needle sewn into your neck) and a femoral line (even bigger needle that goes into an artery instead of a vein in your groin.)

Now this really got to me. I have a lot of trouble with people seeing my body at the best of times, but I am also a self harmer. I have many many scars on my thighs, that no one has ever seen. Then to know people who I dont know have seen that area, really worked me up.

My oxygen levels in my blood had apparently gone all out of whack. Once they started to normalize, I was taken off the ventilator. Again this was rather messy. My sedation seemed to have worn off and I felt like i was chocking on the tube. Everyone was busy, someone else was getting there tube out. Eventually as the alarms kept going off, a nurse came over and decided to suction me (sticking a vacuum down the tube to clear out secretions) to see if that was the problem, even though you could see I was obviously chocking.

Eventually they came to take the tube out. But it got stuck halfway through coming out. The guy doing it just stood there holding it, unsure of what to do. He was going to put it back down. Now having a tube half way down your neck sucks even more than it being all the way as you cant breath past it properly. Luckily, there was an anesthetist there who came and took over. He said, give her more sedation, but I dont think anyone did. Then he just grabbed the tube and gave it a very hard tug. Boy did it hurt.I thought my throat was being ripped clear of my body. And suddenly I could breathe again.

The next day I was transfered back to the normal ward, where all the nurses kept coming and telling me how much i scared them. Dont think they have had any arrests on that ward before.

So after spending 3 weeks in hospital, I was finally discharged. My body is still making far to many secretions, so im still on the steroids (though hoping to get them lowered tomorrow) and nebulisers as frequently as I need them, which at the moment is about 7 times a day. Which is a pain as my machine isnt portable so going to uni, i just have to kinda spend ages getting as clear as I can in the morning and carry on till im gasping when i get home.

My breathing is still worse than before I had surgery. Especially when im rattely, I can find it draining and nearly pass out by just going to the loo. The surgeon says that there is nothing else they can do except to give me a permeant tracheostomy, which I do not want at all!!

I have been doing some research online that is looking hopeful, but I will save that for another day.

So tomorrow at 11, I see my surgeon for the first time since discharge. I dont know what to tell him when he asks how I am. The first part of the week was ok and I managed well enough, but the weekend has been horrendous. I doubt there is anything he can do. And i dont want to discuss my research with him till I have a little more info.

I am however going to ask him what level of damage there is. Others seem to know how narrow there airway is, but I dont. I dont know what else I need to ask him. Im sure I should have questions, yet my mind draws blanks.

Its just so draining being breathless all the time and I feel like I am hooked up to this neb machine all the time. This is no way to live, not for a 23 year old. I shouldnt be so tired. But of course the depression is also playing a part in this and getting me down. I have very little motivation and given the chance would just sleep all day.

But I know other people have it a lot worse than me, so really I shouldnt complain. It just feels like a life sentence, to know that there is nothing else that can be done and knowing it will get probably get worse not better. *sigh* But least I can carry on and such right?

Didnt mean for this to be so long, but thats basically my life for the last few weeks and where I am at now.