Filled to the brim

I like this feeling.
I like it a lot.
I am filled once again with hope.
This month, things seem to have gotten past the hurdle that I was at.
I seem to be making head way.
And, I can but feel hope.
Every last ounce of it.
Radiating through my body.
Starting in the tips of my toes and spreading right through me with warmth and comfort.

Not only do I have hope, I can feel myself full to the brim with love, literally overflowing with the feelings I have for others. The care and respect. I am thankful and this weekend, although it was only a small thing, I was able to repay some of the thanks.

Saturday morning, mum got sick, she had a tooth infection. We didnt have time to sort a doctor out, and instead started on one of my surplus supplies of antibiotics hoping to get her through the weekend for my sakes. Turns out it did the opposite, the set dose, was too strong for her and made her even more ill. I felt so sad for her. I really do hate seeing other sick people.

I took charge of things. I went and got her meds to help with the sickness. I bought some easy on the stomach foods and managed to get her back to where we were staying and to sleep the worst of it off.

I know its only small, taking charge of the backs, cooking the food, making sure she took her meds and fluids, but it was a start. The same today coming home. I took charge of getting food and sorting tickets for the train and such. I hope this passes soon. I will elaborate more another day.

Surgery? well it is mixed news, but overall, I am hopefully for it. I am so so thankful to so many people right now, but again that is another day.

It was a wonderful anesthetic to begin with. Sometimes, they leave me tired and restless with an icky feeling, yet unable to sleep. But this one, left me sleeping soundly for a number of hours and then able to move, though I suppose the morphine does help. I can always tell when they give me that stuff, my nose itches like crazy. The anesthetic techs laughed at me when i had my big surgery, as they restrained my hands to stop me itching, so I kept twitching it instead.

I can also breathe tonight, as the swelling hasnt kicked in yet and its such a wonderful feeling, walking down the road at a proper pace.

But now, it is late, my nebs have run through, my painmeds kicked in and sleep is calling.
Lets hope this stroke of luck continues, tomorrow, oddly enough I have ENT clinic, but for my hearing now my throat.

Moving on

Do you remember these pictures, from about this time last year?

I was complaining about how medical equipment was taking over my life and my bedroom! I later had to move the equipment even more around as I need the suction (That big giant white and yellow machine on top of my desk) to be next to my bed, so it ended up being moved onto my bedside table.

Well,  I have moved most of it! I am taking a step forward. No trach, means that, I dont need the suction at present. I still have to keep the machine for a bit longer, as the future is still a little uncertain, but I dont need to wake up and have it greet me every morning. So now, my desk looks like this; 

Yus, my huge nebuliser is still there, but its out of sight for the most part and I got this little cute blue box, that matches my room and is perfect to hold all those silly little bottles of medication for the nebuliser. I also made a couple of these funky milk cartoon boxes to hold my other nebuliser solutions, but least they still look pretty.

The next investment, I need, is a small bin. I have a big bin on the other side of my room, as I do seem to create a lot of rubbish for it, but those little annoying tops of the nebuliser solutions, seem to end up everywhere, so I want a small bin just for those.

It feels much better, kinda like, I am getting some of myself back again. This has been a kind of work in progress for a couple of weeks. That probably sounds silly, that it has taken me a couple of weeks to tidy my room, but I just lack motivation and energy most of the time.

Though, the timing, I am not sure if its good or bad right now.
Remember last year, when I was having so many issues with my trach and infections and so on. The hospital wanted me to have a humidifier, but there was no funding for it. Well they applied for funding and it was granted around September/October. I spoke to my consultant and with things being so in the balance, he said he still wanted me to have it. There is the hope, that, it may help with the healing of my throat at present.

Well, the hospital have been researching it and ordered it for me and it has finally come in!! WOOWOO!! So Monday, I go for training with it. I need to know how to set it up and work it, in a sterile way as well as all the health and safety and fire hazard training and such. So as far as I know, I should have a shiny new machine on Monday! YAY. Lets hope it helps.

Though, If I am honest, and again, I probably jinx it by saying this, but I think my breathing maybe settling (or perhaps its because I saw the good/top surgeon last time) This Monday, marks the 3 point, where I was normally having surgery, so by now, I am usually struggling. Now, my breathing isnt great and I am still super exhausted, but its not at the point, where I am saying, hurry up and be surgery day, before I pass out. And the headaches have not kicked in yet, though maybe its due to me not rushing my mornings anymore.

It leaves me with a load of questions to ask my doctor, but this post is long enough, so I shall address that, perhaps in another post this week at some point.

Oh oh oh, but I did treat myself to something nice this week. I will probably never have the balance to walk in them, but they just looked so pretty that I could not resist. Ah the beauty.

100% tube free!! (Or Decannulated in medical speak)

As of 8am this morning, I am 100% tube free!!
No oxygen, no feeds, no IVs and most of all no Trach!!!

Last night was difficult. Once the distractions had gone, my breathing kept catching, I could tell I was thinking about it. I remember before I had any breathing issues, when you think about your breathing it just feels weird. I guess this is the same thing, but slightly more extreme. But I also knew that my breathing once asleep, would sort itself naturally.

And it did! I slept amazingly well. I did not wake up coughing, I did not get into a position where I couldnt breathe and have to move quickly. I didnt have to search for tissues or change tubes in the middle of the night. I just slept and slept soundly. The nurse on even commented about how asleep I was. She came to check my oxygen levels but could not get me to wake easily so she just ran the check and I slept through it.

So the docs came on rounds today and said I had done well and so right there and then, they took the trach out. I still have to be careful and let the hole heal over, but that is the easy bit. I then jumped in the shower. It is the first time in months that I have felt the urge to get a shower, usually I run the other way as much as I can. The thought of protecting my neck, then dealing with ties and dressings as well as the effort of breathing and finishing a shower and getting dressed. But this shower was easy.

I then met mum, dad and Cam for breakfast in the restaurant. Again, walked there and back, no coughing, no gasping it was pretty easy. It felt amazing.

Admittedly, when I got back to the ward, I was exhausted. I literally curled up in bed and slept for 5 hours straight. Slept through lunch, slept through many texts and even slept through observations again.

It took me a while to wake up and I still felt like I could have slept longer, but I slept well and comfortable. Mum and dad came and took half my stuff out the hospital. Doctors say if there are no complications tonight, I can go home tomorrow!!

Having a few minor complications, like I keep getting an air bubble in my neck and when I turn my head it makes a loud rude noise, but again, Im pretty sure this will pass and I am not worried.

Also, did a lap around the hospital with Cam. Again this felt wonderful, I was walking faster than I have in a year and not feeling uncomfortable. It is amazing how good it feels to breathe.

Physically, my body is doing great. Now I just need to stop trying to rush myself and allow my mind to catch up. I had this horrible feeling before that I just couldnt shift. A kinda restless, agitated, anxiety. I guess my mind knows things are about to change, but not how they are going to change.

For the past year, as much as I have fought it, I have been defined by my illness. It dictated everything I did or didnt do. From Money, to social, to educational and everything. Now however, all that is about to change. I am suddenly no longer sick. I dont belong here any more. For the past year, my life has revolved around hospitals and doctors and appointments. There is no need for that anymore. My safe haven has been the hospital, kinda like a second secure home. The staff have been my support.

Dont get me wrong, I am pleased that all this is changing, but it is going to take a bit of adjustment. I need to take a look at my life and decide what I want to do with it now, where I want to go. There are so many options and pros and cons to each.

Its like being denied everything and then suddenly being offered everything. I may get emotional over it and I may cry. But its not out of upset, grief or anguish, its more so an overwhelming at this point. I feel overwhelmed at everything that is about to change.

There is just so so much. Life as I know it is about to turn around.

Its exciting and its scary and you will just have to bear with me over the next couple of weeks as I have a feeling it is going to be even more of a roller coaster than previous;

Capped

Last night was difficult. I was without my night time meds so sleep took a long time to come. It eventually made its appearance around 5am and I was awoken at 7am. Yet, I slept. I slept for 2 straight hours. That might not seem much, but I dont think I so much as coughed during those 2 hours, that on its own is a miracle. What is more, I was comfortable when I slept. I slept on my side and lying down, something I have not been able to do for the last couple of weeks. Things felt differnt.

The sun was coming in the window and though it was early, it felt warm. My NG tube position was finally confirmed and I was able to have my meds. Nurse did my obs, all looked good.I felt more awake than I had done in weeks and was up and moving to the bathroom within 15 minutes of waking instead of the usual 30 minutes it usually takes to gather myself. The nurse asked how I was and without thinking I spoke. Then looked shocked when I heard sound come out. Not my tiny whicper I could barley hear from yesterday, but a deeper, huskier voice, still quiet, but louder than it had been the last few weeks. Things felt positive.

I was still tired, so dozed a little in my bed. Finally the lady came to do a swallow assessment. I must admit, it was one of the worst assessments I have ever had. No fancy cameras or blue dye this time. Nope. Here take a sip of water, does that feel ok? yes. Here take a bite of cake, does that feel ok? yes. Ok I will put you down for normal diet then. How simple was that? pretty sure I could have done that myself, the day before and saved a heck of a lot of hassle. Anyway, from then on I was allowed to eat and drink and get my NG tube out. Heaven.

At 1:30 doctors came to switch my tub to a fenestrated one (with a hole in the top) They then caped it (basically covered it so i couldnt breathe out of it) and told to call the nurse if I had any issues and that my oxygen levels would be checked hourly.

The first few minutes were truly awful. I thought this is never going to work. I cant catch my breath. I knew I had to keep trying. My hands wanted to rip the cap off, to take a big lungful of air through my trach, but I knew that would not get me anywhere in the long run. I needed distraction. I text a friend, who offered that distraction. Urging me to keep with it, to rest, to breathe. I tried my voice, it was there just. Still quiet and still husky. Dad has sent me a message, in his typical sarcastic comment, so I thought what the hell, lets make a phone call to my mum. I have not made a phone call in the last 6 months. She answered, she could hear me, just about but not very well. She was on the way into the hospital with my dad.

Still working on distracting myself, I played a game on my ipod and kept texting my friend. Breathing was still hard, but getting a little easier. Mum and dad came bounding onto the ward all smiles. Even more so when I spoke and mum could actually hear me. I was able to explain where we were up to and what the doctors had said. By this point I had been mouth breathing for about 20 minutes. Dad went for a drink and mum made me phone my sister.

She had been driving at the time and when she saw my number on the phone she stopped in the middle of the road. I tell you, its a good job I am already deaf as when I spoke she squealed so loud down the phone. The distractions of my parents where helping me forget about my breathing as where the texts I was sending.

Its weird to think that you can breathe two ways, but it was possible and my habbit of the last 10 months kept trying to make me breathe the difficult way. Physio came to see me not long after that. Listened to my chest, said it all sounded clear, which is a positive, though the bottom half sounded a bit dull so I needed to work on my deep breathing. She then took me on a lap of the ward. 

Wow, I was blown away. The past couple of weeks, I have slowly made my way around the ward gasping and spluttering and sitting back on my bed for 10 minutes to catch my breath. This time however, I walked an ok pace, with drip stand in tow. I was walking so fast for me, that I kept kicking the drip stand and I never usually have a problem navigating them. When I got back to my bed, I was breathing normal, no panting, no gasping no desperate need to sit and still my lungs. It felt wonderful.

I walked to get my parents from the day room and stood there talking, yes standing up and talking for about 30 minutes. Things got a little emotional but I was over tired and my mind was going into meltdown. I then walked back to my bed and such. I was literally shaking with exhaustion, but no sign of breathlessness. I coughed and it came out of my mouth, yeah sounds gross, but when it hasnt done that for 10 months, then it is a huge thing.

At this point, I was now about 2 hours from being capped and not had my oxygen levels checked yet. The nurse came over to remove my drip. Ideally they wanted to leave the needle in for a little while longer, but my hand and arm where it was placed had swollen to twice its size. Fluid leaking under my skin, therefore no reason to leave it in place.

My trach got a nice comfortable dressing on it and my sats where checked. 96%. That is pretty awesome!!

Soon after my friend came. She was excited to hear me speak and getting back from the bathroom without the gasping. She also commented on my lack of cough. She has been witnesss this last week to my horrible, painful cough. Mum made me phone Alison, who told me I sounded like a man and the burst out crying on the phone.

Mum and dad left, looking a lot happier than I had seen them in a while. I was able to have a bit of a natter to Cam and then ate my tea. We then went on a walk around the ward again and sat outside the ward talking for a bit. Actual real spoken conversation. It was bliss. I have missed my voice. Again, she was impressed that I was able to walk without gasping, having watched me get worse the last few days.

Right now, I am running a nebuliser through my mouth. (my throat is still a little dry)

It has been 10 months since I last wore a face mask. Every part of me aches right now. I am tired beyond belief. The last 36 hours have been physically and emotionally draining. But it now feels like it has been worth it. To talk, to breathe, to walk without all the discomfort. Its just so amazing. I am breathing better than I have in 12 months!! My voice is slowly getting stronger, though my throat aches from not being used to talking.

There is so much more I want to add. About looking to the future, about adventures and about freedom. But not tonight. Tonight, exhaustion takes over me. It is time to snuggle down into bed.

If my oxygen levels stay ok through the night and tomorrow, at 1:30 (24 hours after being capped) I can have the trach out!! If my breathing stays ok for a further 24 hours, I can go home.

Go home, trach free, tube free, plastic free!

Oh the joys this can bring.

No more medical equipment, no more machines and no more tubes.

I know this isnt the end of the road, I know there will be more surgery to tidy things up and keep them clean. I know there will probably be bumps along the way. But I feel, right now, I have reached a turning point. I have reached the top of the hill so to speak. (speak, theres that word again) The rest, compared to the last year should be easy.

A step in the right direction.

Life restarted, no longer needing to be on pause.

I go to bed happy and positive tonight. I go to bed shedding a tear, a tear of exhaustion and happiness and for what maybe. 

Heres for tomorrow. And continual easy breathing.

Tubes and inspiration

Right now, I feel surrounded by tubes. Kept alive pretty much by tubes.

Tubes to feed me oxygen, tubes to feed inhaled medication, tubes for fluids and IV medication, tubes to feed oral medication. Tubes tubes tubes. I think the hardest thing about tubes is that it is pretty much impossible to feel anywhere normal whilst surrounded by them. Going the toilet? Dont forget to take your drip stand stand with you. HEadache getting to much, put your oxygen back on, chest to dry, pass the nebulizers, medication time and still not able to take oral meds, put it down the stomach tube. Airway not holding open, lets stick a tube in it.

Tubes can be a god send, but at the same time a restriction. They remind you that things are not as they same, they keep you tied down.

My arms are bruised from yesterdays attempts at drawing blood. Today in theatre, they poked and proded and had a couple of attempts to get an IV in, with not much luck. Eventually decided to use gas to put me to sleep. I awoke with an IV running, back of my right hand, not the most comfortable place, but its in. Its also starting to block, but it has been well used. Hartmens, glucose, potassium, saline, morphine, ondanstaron, paracetamol to name but a few.

I have to admit I was slightly disapointed coming around after surgery. I came around shivering like mad, but thats not unusal. Coughing my head off, again normal, and struggling to breathe again normal, but not what I had hoped for. I knew things wouldnt be brilliant right away and yet I still hoped. The machnies kept beeping and my oxygen got turned up. After the initial I feel crap put me back to sleep feeling you always get when you first come around, I settled, until another need made itself known. A need that would cause great pain. I needed to wee. I assume they had pushed a ton of fluid into me and my bladder was busting. I was not doing the whole bed pan thing in recovery, so I grin and bared it.

They wanted to sit me up to help my sats, but there was no way I could bend in the middle. I hoped to go back to my ward soon. As soon as I got back to the ward, I rolled out of bed, again not able to stand upright and dashed to the loo. wow it felt good. what a relief. Then my breathing came back to the forefront of my mind as I realized I couldnt do it to easily. Snuggled back into bed with some oxygen pushing my sats back up from the 88% mark.

Doctor came to see me later on. He tried covering the tube, I managed about 4 breaths before I started to struggle. Hopefully it is still swollen. Tomorrow, I am down for a tube change to a fenestrated tube (hole in the top) and then see if I can cope with that covered.

Fingers crossed again.

I think I might be able to tomorrow. I am already getting a little more voice out.

Its strange though, its as if I can breathe in two differnt ways. The way that feels natural, but leaves me breathless, I assume through the tube. And the way that feels alkward and takes concentration but leaves me able to breathe better, I assume through my mouth. Tomorrow will tell when the easy way gets blocked.

Also I wasnt meant to have a NG (tube in my nose to tummy) but I am still nil by mouth until I get a swallow assesment and as I have night time medication that can not be missed (anti rejection) they had to put it down. Which I hate and cant wait to get out haha. In the mean time I get to look cool with a yellow tube hanging out my nose.

Through all of this, I dont feel as bad as I thought I would. I guess it could be many things, the support of my friends and family, the drugs or even the fact that I seem to be drawing strength from those around me.

I was going to orginally make a post about how I wish people would quit with shoving things up my nose, tubes, cameras etc. But then the lady in the bed opposite me came back from theatre. She obviously has a lot going on cancer wise. She was in theatre for at least 6 hours (eek) looks rough and has tons of tubes. Yet her family came in and though she is obviously in pain (I can see her monitors) she was smiling and making jokes. You could literally feel the love radiating from her area. Kinda humbling really.

I have also been thinking a lot about a lady I heard about in the news the other day. She has 2 kids and CF. She needed a lung transplant, but struggled to get one. Bascially she has lived in the ICU since April this year on a vent. Seeing her child twice a week, waiting to exhale as she put it. She died the other day. Its such a shame. Everything she has been through and for what? All the time waiting and hoping, the family holding on by their finger tips clutching at straws and jumping at every phone call. Only to lose her anyway. Again, you can see the love around the family and my thoughts go out to them right now.

News article

Waiting To Exhale

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.

The sweet sweet smell of freedom

Last night was another long one.
It was one of those nights when I was exhausted enough to sleep, but it took a while to get to sleep.
And every time I was just drifting off my chest would complain and I would find myself sitting bolt upright coughing my guts up.

A couple of times a nurse would come in and shine a light at me to see if I was blue yet (ha) or to give me a pat on the back. They offered all the usual, nebs and suction, and I of course refused, determined not to waste anymore awake time on my chest willing my body to go to sleep and my lungs to stop complaining.

Been experiencing some pain in my throat today as well. If I lift my chin, I get a pain down my neck and some other fun random pains. But the worst thing today is that I have started to struggle with my tablets. Since my op last week I have only been taking my meds one at a time. Most go down ok, but today the capsules have begun to get stuck. Lets hope they slide down a little easier tomorrow. Though I think the hospital tempt you a bit too much with the delivery. I mean, small plastic glasses to me have always symbolized alcohol shots, which is usually a good night from what I remember. But here they fill the shot glass with little tablets. bah I prefer the older method of shots.

So, today I have been behaving. I have been running the dreaded nebs, in the hopes of getting a good nights sleep tonight. I have also been going crazy stuck on the ward, so after much pestering, the doctors have given me permission to leave the ward on the condition that I have somebody with me and that I dont leave the actual hospital. Ok, its not great, but it certainly is something.

So off I went on my little adventure with my mum. I wanted to go to the shop and pick a magazine. No real reason, it was just an excuse to get off the ward. I dont know where anything is in this hospital. I arrived by ambulance coughing and spluttering and in pain. I came out the shop and mum asked if I wanted to see the front of the hospital. I was in too minds. The walking around felt great. Stretching muscles that have not been stretched for a week, giving my lungs a good work out. But at the same time it was hard work. Within minutes I was gasping for breath and that was walking slowly.

The tube I have in at the moment has an inner diameter of 5.5mm, thats about the size of a McDonalds straw and boy did I feel it. I did however, push myself to head out.

What I found was a nice looking front. A pond with fish, sculptures and shops outside. I couldnt go any further. It was disheartening and chocking. I wanted to go breathe some fresh air, to expand my lungs and appreciate the day. Instead, I was met by a cloud of thick smoke. People stood around everywhere with cigarettes. It makes me want to scream sometimes. They are at a hospital and they are damaging their body without a care, while I am gasping for reasons that were not self inflicted.

But anyway, it was nice to get outside. Nice but exhausting. Coming back up in the elevator, I thought I was going to pass out. My body was crying out for air, begging me to breathe deep, but I couldnt get the old stuff out quick enough to get the new stuff in. I literally collapsed onto my bed and straight into another coughing fit.

Sweat was pouring off me. Couldnt undo my scarf quick enough, mum helped, and helped me out of my jacket. Took about 15 minutes to catch my breath again.

It was a stark reminder of how much I hope this operation has worked. If it has, it will be so worth it and I will be so so grateful. I cant keep my life on pause any longer. Being in hospital has shown me that. Yes, before I came in I wasnt doing much, but I was looking and feeling generally ok apart from the tiredness. I miss that, I miss the small social things I would do, like having a friend over or going to see my sisters kids. My resolve is made. This needs to work. And for this to work, I need to kick my butt into gear and help the situation.

This mean exercising more and cutting down on what I eat. I need to lose weight, I need to get fitter. I need to let it rest when it wants to and I need to do the treatments meant for me. Regular nebulisers, humidification no matter how stupid it looks. If i look after my body, maybe it will repay me in kind.

oh, and look what I just stumbled on on the internet.

Im sure you all know that, it is a copy of the old Pokemon cards. Ah happy memories with them. but but but its like the Trachea! how amusing.

So here is to health and improving and getting better!
Bad feelings about this dont count, I am now putting in the positive vibes as I want this to have worked, I need this to have worked.

Some days

I wish that things were more predictable.
Some days, I am pretty normal, you would know from looking at me that there is anything wrong. I can push myself and I can have good days, I can really push and have a couple of good days. I can to a point put a front on and grit my teeth and get on with things, without anyone knowing that I am feeling rough.

But then other days, days like today. I just feel so weary and tired that I have not the ability to care about keeping up appearances.

I slept well last night and got plenty of sleep. I did go out yesterday, but it was for a short time and I didnt push myself I just took things slowly and such.

And then I awoke this morning, and all I wanted to do was curl up and sleep for another few hours. I forced myself to get up and dressed. My usual routine now would be to help mum with dinner then we usually do something, like go for bread and milk and such. But I just didnt have the energy. I sat in the chair, staring into space. I managed to go out and get a drink just as dinner was done. I sat watching tv after dinner with my mum, shivering and feeling further exhausted.

I went up stairs to get a jumper, sat on my bed with my jumper on catching my breath and just couldnt move. If I was staying in I would normally play on the computer or read or something, but instead, I ended up curled up kinda drifting between sleep and awake for about 3 hours.

I had a routine doctors appointment to go to, to get my holiday meds sorted. Managed this, but had to ask mum to drive me as I just didnt feel up to driving.. Went home and curled up on the sofa. Didnt help with tea, didnt wash the tea dishes. Dragged myself upto bed, put the tv (which I hardly ever do) and just lay watching it all evening, I dont even know what I watched.

I cant even sleep in tomorrow, I have to be up mega early (for me anyways) as I have Liver clinic in Leeds. First one since I got trach. So thats about a 80 minute drive each way, plus time in the middle for bloods and examinations and speak to the doctors. blah. My dad has altered his shifts to take me so that he can drive. I just hope I dont feel as exhausted tomorrow.

oh and as for the doctors, my swab came back. I have cleared the staphylococcus but the pseudomonas is still present. I dont have a temperature, so it does seem to be just in my trach site at the moment, however, I have to do a sputum test first thing in the morning (joy of joys.) and have that sent off to be tested. Then I have a nice course of cipro to complete. Which I hope work as I finish them the day I go on holiday so if it dosnt clear it up, it will have to stay there for 2 weeks.

On that note, I can barley keep my eyes open. The only reason Im sitting here writting is because I forced myself to run my nebs, though it was a battle. So im going to crawl into bed now. And be up in 6.5 hours.

1000 and brick walls

First off I want to say Thank you to all who read my blog! And to those who comment, the comments really do mean a lot to me and I read every single one of them even if i still have not yet learned to reply to them. (Apart from you silly people who leave anonymous comments because I sit and wonder all night long who you are :-p)

But yes 5 months and 48 posts later, I have hit a 1000 views! so yay Thank you!

Now onto the boring stuff so feel free to close the window at this point. :p

How is it only 9:15 pm. It feels like about 12:30am. And im blogging before midnight, thats a surprise for me.
However, what isnt a surprise is that I am about to embark on yet another one of those self centered rants that I am getting good at producing. blah.

I feel like I have hit a brick wall and have no where to go right now.
You see, I have always jumped feet first from one thing to the next. As soon as I got out of hospital after my transplant and I was able to walk far enough my aim was to get back to college, which I did part time, and worked up to full time with the aim of going to uni for nursing. Got into uni and loved it, worked to get my driving license, had to leave nursing and aimed to go back to college. Got back to college and had to leave due to psych crap. Aimed to get help for it and get back to college. Got back to college and aimed to complete the course. Ended up in hospital and had to drop it.

Then I lived for a while in and out hospital. Jumping from one emergency to the next, in and out of ICU, back and forwards to theatre. Drugged up and drama'ed up. Hospital kind of gets like that. You live from one drama to the next and the time in between in a safe little bubble where you dont have to think for yourself, you dont cook, you dont clean and you dont worry about things like nebs and medication. Where if you feel sick you press a button and you get a nic jab and the sickness goes. Where if you feel ill you mention it and 5 minutes later have a team of doctors there to puzzle out why and the best action to take. But I have been out for about 6 weeks now and the appointments are getting less and things are settling down.

But since then, I just feel like I am stuck. I dont know what to aim for. I dont know what is happening. I dont know if my breathing is going to get better, I dont know if I am going to get my voice back. I dont know what I will be doing in September so I cant plan for college.

I saw my surgeon today. I dont think he knows what to do with me.
I didnt think my mum really noticed my breathing much anymore as shes always oh get on with it and live around it and such, which I do try to do. But when the surgeon asked me how the breathing was going and I didnt want to disappoint him and just kind of shrugged mum started going on about how I sounded like a steam engine and how much stairs kill me and such. He still thinks that it will settle and get better as I recover more. I should trust him, hes the one with knowledge and experience. I just dont see how it can get better. The tube means that I have a nearly normal airway. If I am breathless with that, how can it get better?

I asked him if it is defo my airway making me this way and not a result of any previous surgery such as my thoracotomy. He said he dosnt think its anything from the past as he thinks my lung functions where pretty normal before he started on my airway. But truthfully, if I remember rightly, my last lot of lung functions where ran about 4ish years ago, before I started really struggling, which is at least 2 bouts of pneumonia and at least 7 chest infections ago.

My blocking the tubes so frequently and the top covering over and bleeding is again a result of my body not liking forgiene objects. This is what he battled all the time with the stent and why it didnt succeed. It will probably always be there. and the crap on my chest that I am constantly clearing, well that may settle down in time or it may not. urgh.

On a more positive note, he referred me to the surgeon I requested about a month ago so I should be hearing something about that soon *fingers crossed* he is however going to send me a copy of the refferal (is it wrong that I am excited to read this? It will contains numbers and facts and will hopefully tell me a little more) but he is sending me that so that I can chase it up further if I wish to and see if I can hurry it along.

I expected him to take the whole stance of, well there is no rush and its not worth rushing into things, but he seemed the opposite, more so we need to get things sorted sooner rather than later. Which is true as I dont feel I can move on until I know one way or the other. I am kind of pinning everything on this referral. I know if they say no, then its time to accept my fate and begin to learn to live with things the way they are, but I am pretty stubborn and until I am told for definte that its a no go area then I will keep wondering.

My voice is getting worse. Its noticeably quieter, but its the bits that no one else sees that is becoming the problem. The energy it takes to force voice out, the dizziness from not getting rid of CO2 while I am talking, the banging headaches that follow a conversation and the nausea that follows them.

I need this referral to come through and I need for it to be a success.
This is the only thing I can think to aim for right now. To try and chase up the doctors and surgeons and get an appointment. But of course that comes with its own problems. Putting so much on something that might not even be possible? Well if thats not setting myself up for a fall then I dont know what is.

Anyway, enough ramble.

So damn frustrating

I am not sure what I want to post tonight, but I feel like posting something.
I am trying to remain positive and for the most part its working, but then things bubble up and get so damn frustrating that it makes me want to cry or scream or something. Of course lack of voice prevents the whole screaming thing and as for crying, well dont go there.

I had my appointment today for ENT clinic today with one of the surgeons who was going to try to give me my voice back. However, he called in sick this morning and so he wasnt there. Therefore the appointment just became a tube change appointment with the nurses. (Whom I can not stand but more of that later)

I had a load of things I wanted to moan about to him and hopefully get some solutions. Things like permanently coughing up crap, waking in the middle of the night and having a 40 min coughing fit trying to get it up, pain, my referral to the other surgeon and of course my voice.

So the nurse at clinic knew about most of these problems because the nurse who has been coming to help with my dressing called her to ask if there was anything they could do as I was starting to look really rough from lack of sleep and aching form coughing. Well one nurse took my tube out while the other one wasnt in the room and the first thing she said was 'god how long have you had that tube in its looking really blocked' When I told her it was just over an hour she was genuinely shocked. So the whole tube thing went fine and then I was talking to the other nurse, whom might I add is a tracheostomy specialist nurse.

She had never heard of the covers that I had ordered for my tube as opposed to what I am supposed to wear. (I will photo one at some point) But anyway, they basically look like a big baby bib made of like foam and cotton. It keeps dust and muck out the tube while warming and humidifying the air that is breathed in. These new ones I found just cover the trach instead of half your chest, so much more aesthetically pleasing. Now these have been out for about 5 or so years and are fairly well used by a few different hospitals whose internet sites I have been scouring and yet this specialist nurse had never eve heard of them. (Im pretty sure when I trained, part of the ruling was you had to keep upto date with all aspects of your chosen field)

So anyway, my mum was telling her about my coughing all the time and her first response, oh well maybe the tube needed changing which we have done now so it should get better. My response, well it hasnt improve with the last couple of changes. To which she then decided that it was a combinations of dust, central heating and not drinking enough. To which my mum told her I drink tons any way after having a liver transplant and having had kidney trouble, I keep my fluids up (believe me dehydration sucks when you have crap veins) and that my room where I spend most the time is throughly cleaned and disinfected at least twice a week. oh and that I also had the same problems in hospital where there is no central heating. Her reply, oh well your body will settle down soon once it gets used to the tube.

At this point it took great restraint not to go an physically bang my head on the wall. I am struggling with this. This is beyond normal! My body does not do normal! Hence why a stent works for everyone else, but I end up in ICU when I have one. Why most people have a voice after a trach and I dont. All I want is some sort of confirmation that something isnt right or some suggestions on what I can do to correct it. I mean I am still exhausted all the time, I still get out of breath carrying my dinner from the kitchen to the living room and have to wait 5 mins while I get my breath back before I can eat. Something isnt right.

I am doing everything I am told. I am doing my physio, I am exercising, I am doing my nebs, I am taking my medication. But things are not getting back to normal.

I mentioned about wanting a tube that sticks out less but that I couldnt find the order code so could she have a look for me. Her reply, well if you get that type of tube you cant wear a speaking valve. oh darn it sherlock how could I have not thought of that! Not the fact that I cant (and she knows it) wear a speaking valve as I have no upper airway which you need to wear on.

And then she mentioned about tube sizes and how they gave me a smaller tube so that it would help my voice. At this point I was feeling pretty tense so I just looked at her and said (well whispered) guess what... it didnt work and I would rather be able to breathe through a decent sized airway than having a smaller one with no change to my voice. She started going on about how you cant tell the difference between tube sizes. I should have asked her how she knew. And how plenty of people have that size and manage just fine. But i have to wonder are they all elderly people who have had cancer (That is what most the info I can find on adult trachs relates to) or are they in their 20s wanting to lead an active lifestyle? And if so what the hell is wrong with me, why cant I move without panting.

I am just so fed up with the whole damn thing. They look at me and speak to me like I should be grateful that I have this tube kinda 'oh look it saved your life you should be glad your still here' and crap. But you know what, i'm not! Im angry and im bitter and im frustrated and tired. Im fed up of fighting just to get through. Cut me some slack, I want to tell them (or even do it myself) to just take the damn tube out because I have had enough with the coughing and the pain and everything else that goes with it.

Its just so bloody frustrating.
oh and joy of joy, the benefits people think I am lying to them and have made an appointment to come out and see me/ question me next week. Just what I need.

Any chance of an extension

urgh why am I so damn tired all the bloody time!
Last night I got about 9 hours sleep with only 2 interruptions. Didnt get up till dinner time. Had my dinner and started drifting off in the chair. A bit later my friend came over and while she was talking to mum I once again fell asleep on the couch, where I remained drifting in and out for about 2 hours. trying to fix my mums computer and I literally couldnt stay sitting up so I left it broke for now. meh job for tomorrow.

But I mean come on, I'm 24, supposed to be in the prime of my life and yet I cant stay awake for more than a couple of hours.

oh well shopping with mother tomorrow. Hopefully more energy so I can walk around. Oh and I must have overdone it on the Wii the other day boxing as I could barley move my legs yesterday.

I wonder if the NHS would pay for an extension on our house? I have way to much stuff to store these days. I took these photos a couple of weeks ago.

This is my supply cupboard with dressings, filters, ties, cavalon, sterile equipment and other fun such things. On top is my home care file, suction catheters and my emergency/tube change box. I have since received another bag full of differnt dressings to add to what I already have so go knows where they are going to go.

My once beloved computer desk with my top spec machine on that I used to use for web design and programming. (That computer hasnt been turned on since October >.<)

This is Sam, by suction machine and of course the mandatory bottle of hand gel.

This is Nessie my Nebulizer (With a rather long cord so I could still do things like getting ready for college of a morning while it was running)

This is my Kit bag that I dont leave the house without. Alco gel, spare tubes, tissues, wipes, saline and filters. fun eh

My 2 weekly med supply (the other 2 weeks gets stored in cupboard whereas these go in the draw next to my bed)

And this (apart from dressings) is what I have to pack if I am going out for a night eg: 24 hours worth of
meds.

So yep, my once geeky room where the main thing was my computer system has now been taken over by med stuff. fun fun fun

hello brickwall

urgh
Ever feel like no one knows what they are actually doing?

When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.

Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)

So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.

So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.

Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!

Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.

And that is  my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.

Tonights cocktail. Pills the bain of my life. or should that be nebs the bain of my life after today.

movie night

Tonight was movie night. What better way to spend your friday night. So what if the film gets interrupted a few times while meds are set up and obs taken. After all this is no cinema with is 'please turn your phone off' messages (although they are posted on the door to the ward.

We had chinese nibbly bits, salt and pepper wings, spring rolls prawn crackers as well as coke and cookies. My room still smells nice from the food, even the nurses comment on how lovley the food smelt.

Saw my surgeon again today. Its odd how he always manages to time it so I have just fell asleep. I decided to have an afternoon nap and was just drifting off when he came in. He spoke about me going home, that he will order my equipment and try to get in touch with the team who manages trachys at home. Said as a trial I can go out for a few hours over the weekend.

So tomorrow, mum is comming by with some clothes for me at 10, right after my morning meds and we are going out. Shopping i think, if I can mange it. Im a little apprehnsive about it. It will be my first time in public sporting my trachy and also I dont know how far I will be able to walk. But most supermarkets have wheelchairs I can use, even if I do hate to use them.

Mum keeps asking if we should buy our own wheelchair and in answer, I just dont know. I dont want to go back to it nor do i want to be dependant on it, but at the moment everything is such an effort and I need to start building up strength again. Who knows how long that will take and in the mean time I cant just sit about and do nothing.

But tomorrow, im going to surprise my neighbor. She is in her late 80's and has been worrying about me. She told mum she didnt know about seeing me next as knowing everything I have been through she will probably cry and she dosnt want to cry in front of me. So yeah. She is sweet really so I may just knock at her door tomorrow and surprise her.

I have spent the day with no humidity on at all and my chest still feels clear. I also keep telling them I am doing my nebs, but I havnt been. oops. I just dont feel the need, there is nothing on my chest with these new meds. Its great, really great not coughing up tons and tons of gunk all the time. Hopefully it will last. But Im not going to tempt fate too much, I will run my humidity tonight just to be on the safe side.

Acostumed

So I have been moved to the HDU section of my usual ward. The staff apparently are not trained enough to look after me on my normal ward, but will be getting training tomorrow. So I can go back once that is done. Its already hard being here. Im used to when needing something just asking and its done within minutes. Here, when I need suctioning I have to ask and wait till they get time. It took nearly 2 hours today. I dont think they realize how uncomfortable it is. Making loud noises when breathing, taking shallow breaths so as not to disturb the crap that needs to come out and denying the urge to cough as its so damn painful and gross.

But whats got to me more at the more is how accustomed I have become to my environment. There is a young girl in the bed opposite me, she is probably about the same age as I am and has just come back from theatre. Yes she is rather drugged up and sleepy and such, but she just looks so scared. Every time the machine beeps its like she jumps. She dosnt look relaxed here.

And I cant help but think , that perhaps I shouldnt be so relaxed here. Should heart montiors, oxygen, hickmen lines, IVs, medication all be part of normal life? Should I be surround with such things and thin nothing more of them than I do with inanimate objects such as cups or blankets. They all serve a purpose.

I know I trained as a nurse, but really at 23 should I have the medical knowledge that I do. Should I be instructing the staff how to set up a piece of equipment like I have just done tonight? Should I be fixing my own IV machine when it beeps? Should I even know half this stuff? But more so, should I be so damn comfortable around it.

Most people when they go into hospital it is a big deal. Its something out of the ordinary, especially at my age. Here I am welcomed back onto the ward like an old friend. Staff from the far end hearing of my return coming for a gossip and catch up. On call doctors already knowing my case and asking how I am on there way to treat other patients.

Perhaps its a good thing, a protective thing. Coming here is like visiting friends sometimes. Maybe I need that protection. Because if I was to have that fear that the girl opposite has, I think I would go mad in here. Her face when they said they needed her to lift her top a little so they could conect her to the machines. But being stripped of dignity in this place, although still feels awkward, just seems normal now. To use the toilet in front of a nurse, to have someone help wash you, to have your pressure areas (your bum) checked regularly, just seems kinda normal. Well not normal, but something that has to be done whist in here. Needs must and all that.

Downgraded to HDU!

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.

Breathing Space

Its been a mad few days. I feel like I have lived on my nebuliser. I havnt slept through a whole night yet without waking because my breathing is so restricted. I cant walk anywhere, even going the bathroom I come back gasping. I tried going shopping in Tescos with mum on Saturday. My throat became so tight that I felt like I had to physically suck air into my lungs, my chest muscles where killing me. Mum could tell I was struggling. She kept asking if I wanted to go and sit in the car. I said no. I couldnt tell her that I didnt want to sit in the car alone incase I went into respiratory arrest again. I was starting to panic, it really did feel like I was going to pass out.

Its really not a nice feeling, struggling for breath all the time. I could manage it when it was only struggling for breath on things like running up the stairs, but half the time Im getting this now just sitting still. It is exhausting me so much that I have been getting up late and still going for an hour nap in the afternoon. Problem is, I still wake up from my nap gasping and having to jump straight on my nebuliser.

Mum said before that I cant live like this and I think she is right. As much as I dont want it, im going to have to look into a permeant Tracheostomy. Just the thought of it makes me want to curl up in a ball and cry. But I think that I have pretty much reached the stage now where things are unbearable. I really dont want to consider having it done. Plus I dont have time now till the summer to have it done. Can I last that long as things are? I have a lot to think about.

I cant keep complaining about this to my surgeon, I already feel like he has had enough of me. I bet he regrets taking my case on. I dont see him again till two weeks on monday. That seems like an awful long way a way to live like this.

Saw my GP on Friday. The amlodipine hasnt even touched my pulse or blood pressure, they where both still very high. She has doubled my dosage now up to the maximum of 10mg. My bloods all came back clear again apart from my white blood cell count. I have to go for an ECG on monday now and I have to have more blood tests to check my hemoglobin and fasting glucose. She is still looking for the cause of my high blood pressure and wants to decrease my effexor dose again next week when i see her.

She started asking me all kinds of questions about if I was self harming and if I was suicidal. Mum was in the room so of course I lied my way through and said no I was fine. She asked when I last harmed and I just said about 3 weeks ago. Which is true as I havnt had the energy to do anything lately.

When we got out the doctors mum said to me, so what happened you got straight out of hospital and started harming again! I just shrugged and said I only did it once. I couldnt tell her I was doing it in the hospital. I think she may have had a heart attack if I did.

I needed a break so I went out with Alison on friday night. We went out for a meal. It was nice. But the topic of conversation soon turned to Peter. And of course in turn that went to Dave and me in hospital an all those other fun subjects. I kinda felt distanced from them all while talking about them and blocked most feelings out. Still not nice though.

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.

Stressful weekend

What a weekend and its not over yet.
It started on Friday, when my friend phoned me to say she was being admitted to hospital. She had started new anti depressants but had gone into serotonin syndrome. I got lots of random texts off her that didnt make a lot of sense. by evening she was being discharged, which judging byt he way she was talking, I didnt agree with at all. She left the hospital but she hadnt been fully discharged as of then. The hospital rang her and asked her to come back as they wanted to give mer some meds. She didnt want to go back, but after a bit of persuasion, she did. All they did was give her a couple of days worth of sleeping pills. She went home took one and was out for the count.

Saturday she was hyper again, talking to her on the phone she was speaking so fast I could hardly understand her. She went out with a friend so I thought she would be safe. Her friend took her to a club, where she said people where listening to her thoughts through the music so she came home and took her sleeping pill again.

When I came online later on she was freaking out. Apparently someone was out to get her, they where outside the window and had swapped her meds as they now had a funny smell. I rang her and she said they where in her room but they had gone when the phone rang. She went to sleep but was awake fairly early. And that brings us to now. She still thinks people are out to get her, but she is hyper again.She wont go the hospital incase its them out to get her. Just wish there was more I could do. I would be down there in a shot if i was well enough.

But last night, I nearly chocked. After bragging the other day that I had gone a few days without needing my nebulizer, last night I blocked up good and proper. Got to the point where my breathing was getting stuck when i breathed in and out. I had to take huge big gasps to get it in and cough really hard to get it out. I was running my nebs again while I was doing this, but I was just about ready to say to mum get me to A&E. That would have been fun. Why is it always a saturday night? Anyway, after a lot of scary coughing, I finally managed to clear it.



Then I got some more news. Peter Chapman, the guy who I always thought had helped saved me, is being convicted of murder and is s know sex offender. Apprently he met a 17 year old girl off facebook, he was 32, and he killed her I really should remain single for the rest of my life. The last person I slept with is a known sex offender and now a murderer and the person before was a known rapist. Great choice I have in men. (gazzette article)

Pete was so kind to me. He gave me somewhere to go when things got violent with Dave and I had to get out. He went to the police with me, he held me while I sat in that horrible waiting room waiting for the police doctor to examine me. He made sure I ate and he sat and cuddle me all night when I couldnt sleep when we got back to his. When Dave went for me the first time, he pushed him into the kitchen away from me, when Dave caught up with me in the hall way brandishing his knife, Pete went and got help, even if it was to late, its the thought that counts right. He came to visit me when I was in ICU.

Even once I got out of hospital, he came to visit me a few times. He used to come the pub on a friday night with Haley and me. I was going to marry him, I decided at the time. He abused my trust then, but I never thought he was capable of doing what he has done. I was having trouble topping my phone up, so stupidly I gave him my bank card number and asked him to try from his phone. The follwoing week £30 went missing out my account to his phone. I couldnt deal with losing the trust I had in him. It was so hard to have any trust with anyone as it was and so I cut all contact with him, changing my number and such.

And until last night, that was the last time I had seen him. Pert of me is saying, how could he do that to someone after he saw what I went though and how much it effected me. Another part of me is saying maybe its my fault. Maybe, its some kind of psych compliant, kinda like he witnessed everything that happened to me and reenacted it. The girl was 17, he was 32 thats 15 years different. There was 10 years between Dave and I.


For some reason I have an urge to go to his trial. (3rd November) I know it would only cause upset. That I wouldnt be able to handle it in my present state. The urge is still there though. Didnt sleep much last night thinking about it. I cant get him out of my head. Seeing his picture in the paper just bought it all back. Which then of course had memories of him running through my head, which lead to memories of Dave running through my head, which in turn leads to even more nasty memories. Just wish my head would silence for a bit. I have to keep busy or it all starts playing through my mind. Stupid PTSD.

And of course I would normall make a post for support and I would normally talk to my friend about this, but I wont put any of it on her. Shes not well. I will tell her when she is better, but who knows when that will be. Its times like this I realise just how few friends I have these days. I guess I have pushed them all away, to be honest most couldnt deal with having a sick friend. When I first had my transplant, I couldnt do much for myself. They where young, 17/18 wanting to be carefree out having fun, not stuck with someone in a wheel chair who spent more time in hospital than out. From then we just grew further apart. And I havnt had the trust to make new friends really.

Anyway, enough depressed rambling for one entry.