Im ready.

I havnt posted in a while, I guess I have been trying to get a handle on where my life stands and how I feel about it all.

Last week, I had a panic attack, only a fairly minor one one night, but still, the first one I have had in a long time. Since then, I have done some pretty serious thinking.

I know what was bothering me, what was causing the problems. Its the whole death and dying thing. Things were put pretty bluntly and just when I thought that I had made up my mind, the words of the surgeon, bought my whole world crashing down upon me, making me reevaluate my decisions.

My mind has been everywhere, between denial and despair, joy and triumph. And its only now, as fear builds up its height, that I am truly able to see over everything.

Last year, my extended spell in hospital destroyed so much of me. It broke me beyond where I thought repair was possible. Not only was it a toll on my body, it was a toll on my mind, my spirit and my resolve.

But today I look back and I can admit that I was broken and it was scary. It has taken a heck of a lot of work to build myself up again and the mere mention of surgery was enough to make me quiver with visions of being the ill again. But I am not that person any more. I am stronger, I have faith in surviving again. Back then, taking a shower, would be a long and draining process. It would take all I had to manage it, before collapsing with exhaustion on my bed to sleep for hours. But now, I am still restircted, yet I am able to shower without needing a break. I am able to do that and more besides. I have made peace with who I am and more than that, I am oh so grateful for what I have.

These last few weeks have been amazing. From going to Turkey with my niece, to greece with my parents. Visiting Devon with my family and this past weekend, Alton Towers with my two nieces. I have taken steps to rebuild bridges, I am slowly bringing my family back together. Its early days and its baby steps, but my heart feels happier for it, at the prospect of once again being close to others.

Of course the flip side to that, is once they go home, I am filled with this lonely ache deep inside me. It has taken all of today and yesterday for me to put a name to this feeling and recognise it for being lonelyniess. But that is a good thing surely, for recognising, instead of wanting to shut away alone, away from everyone.

Right now, I am happy. I feel strong, I feel positive. And more than anything else, I guess I should say that I feel ready to defey some more medical boundries. So my sleep patterns not great and bad thoughts fill my nights. But right now, I am able to fight that.

And so, next week is going to be a simple in and out of hospital trip, everything to plan and I will bounce back from it, as I always used to. And I will talk to the surgeon. Its my turn to tell him where I think things are. That, sure, I am not runing any marathons, nor joing a talk show. But right now, I surviving. More than that, I am flourishing within my limits. I still have enjoyment, I am still able to do the things that I want to, just with a little more support than usual. I am not ready to pin my life on a risk. I am however ready to fight. Ready to achieve some more goals. Ready to kick ass and fight back.

And so, my thoughts are still against me, the dreams, the flashbacks, the panics. But my physical self is still here. I still have a way to go. And I am ready to go that way.

I be back

Ah, so you may or may not have noticed that I am back! :)

Court went well, with no problems like I have had previously, but this isnt some place where I can discuss that.

Aside from that, I actully put my blog back a while ago, life has just been a bit hectic, which is actully a really good thing.

In the last couple of weeks, it feels like the mist around me has finally lifted. There are many reasons for this, I think, such as medication levels being played with, time away from hospital, the court case being over. Thats not to say that my mood and such is perfect, but it is way better than it was a few months ago. Over Christmas and probably before then, I was feel very fragile. I had given up hope of things getting better and I was filled with resentment and no real purpose or goals in life. My time seemed to be come home, rest and get over surgery, spend a few days catching up on things like paper work, laundry and appointments. Book my next round of transport and hotels and then go back for surgery again. I had such high tolerances to the pain meds, that coming around, morphine no longer even touched my pain and I was needing IV ketamine followed by oral ketamine.

Now I am being careful not to blame the hospital to much, else I will end up dreading my next admission, but over the last year so much of my life has revolved around hospitals, admissions and appointments, kinda like a bad relationship. You dont realise just how much it has been taking out of you, until its suddenly not anymore. But that is no reason to never have relationships again. Or at least that is what I am telling myself.

But little things are slowly changing and I am being careful not to change them all at once, else I know I wont keep it up. I have cut down a lot on the junk that I was eating, hoping to lose a bit of weight, but we shall see. I am eating healthier and slowly trying foods that I wouldnt even try not so long ago. I ate red cabbage the other, I have started drinking tea (typically british, though I prefare lose leaf earl grey, black with just a touch of sugar) This week I have started drinking espresso, which is something that I never thought that I would be able to drink, but I am actully liking it, it gives me a bit of a boost when I have no energy. I am eating a lot more fruit and though I still love my truck (scooter) I am pushing myself to walk further. I still get out of breath and I get lots of disgusted looks when I have a coughing fit, espcially when I find myself having to stick my head on the side of a shopping trolley, to keep my balance while my muscles cramp from the effort, but thats people for you and to be honest, if I heard someone coughing like I do, then I think I would stay as far away as possible. That being said, someone did tell me I was disgusting the other day and that I should go outside. I was in a pub having food with my parents and I just couldnt help it. Kinda ruined the mood, but again, some people suck.

Tea?

I am working on updating my wardrobe and have even been out today and bought a few new bits, including a little blazer jacket and some other items that I never thought I would wear. I am getting to that point, where I am too old really to wear hoodie jumpers and though they will always remain my go to comfort items, on days I feel up to it, its nice to wear something a little bit more classy. That being said, I am not ready to give up my jeans just yet. And of the course the most exciting thing about losing a little weight is getting back into my jeans that became to tight during my long admission.

hmm what else am I changing. Well, I am trying to go to bed earlier, doesnt always work, like tonight for example, but I used to make sure that I started my nebs by 1am, now I have pulled it back to 11pm (they take about 2 hours to run), though may work on getting it earlier once I find 11 easier. I have started setting my alarm clock for 10am and being out of bed by 11am. This week, I am working on getting over my fear of showers so instead of having a bath of a night time, and always putting it off so it ends up being about once a week, I have now started having one as soon as I get up, everyday, unless I know I am going to be out all day. If I am going to be out most of the day, I dont have the energy. It also means that I am dressed before 12, when normally, I would spend most of the day in my pjs. Overall I guess I am just feeling more alive and I am so thankful for it.

I am still working on moving my room about, always knew it would be a big job, but so far, gotten rid of so much stuff and it is not only nice to use but easier to keep clean. I promise pics once its done.

As for hospitals, right now I am avoiding an admission. I have just finished a 2 week course of cipro antibiotics and though I began to feel better on it, within 3 days of finishing them, I ache so much from coughing that I am hitting the painkillers again. The hospital, after many messages back and forth have decided to fit a port in my chest, to make IV meds easier, I am also hopeful that this will mean that I can run the meds at home instead of having to go into hospital. Fingers crossed on that one. They are also going to arrange some more sleep studies, to see if there is anything they can do to help my energy levels. I virtually always wake up feeling like I have not slept, I sleep for 10 hours plus most of the time as well as falling asleep during the day and finding it hard to wakeup. They want to look at my blood gases incase there is anything there. I doubt it will show up anything, but I am super thankful that they are still trying to help little moaning me.

As for London. London these days means two things. First off there is the side of it which I will refer to as medical, which is my appointments. I was there last week, and my trachea still looks red and inflammed, which is why breathing is still hard, but the inflammation also makes it easier to grow scar tissue again. Nothing they can do about that though, as they have already tried blasting it with all kinds. Breathing is still hard and you can hear me come from a way off, talking is also hard and often, I will talk and no sound will come out. It can take two or three attempts to get my words out and even then, only short quiet sentences. They want to try putting a stent in the airway to hold more of it open. I dont know how I feel about this. If I thought it would be straight forward, I would jump at it, but I have had issues with them in the past and the continual chest problems, can also add more problems to it. It could also mean another long admission. If it went straightforward, it would be a week, but complications could make it much longer. There is a possibility of going in in May, but I need to sort some stuff out first.

Now the other thing that London means, I am going to refer to as educational. Again, I am bound by what I can say, but I am working/helping out at UCL (university college london) on some medical trial stuff. I get to work with a bunch of people there including the professor that I met years ago. Its all very interesting and they are open to me doing as much as I want within the university. Last week I went on a course about research. I will write more about that next time, but it is so wonderful to feel useful again, to have even a slight purpose and who knows what it may lead to.

I was there last week. I travelled down on the Sunday and stayed with a friend. Spent Monday at the uni, tuesday I went to Camden with a friend I met on my last cruise and Wednesday I had clinic. It was a bit much in honesty. When my parents picked me up again on wednesday afternoon, I looked like crap and couldnt keep my eyes open, but it was worth it.


Right now, I am just so grateful so a huge amount of things. The uni for including me, the proferssor for having faith in me, my family for holding my up when I could no longer do it myself and my friends, for not only believing in me, but being supportive, yet truthful, for judging or arguing, even when conversations got hard and must have been difficult for them. For all the hospital staff, from cashiers, clinic nurses, drs, nurses and even cleaners, for treating me as a person and making hospital that little bit less icky. Without all of these people, I am sure I wouldnt have made it this far. And as I begin to rebuild myself and my life around my limitations, I can see that I would not have made it this far has it nto been for them, each and every person, in their own unquie way. So if you are reading this, Thank you. And to my followers, even the smallest of comments, can bring sunshine through a storm, can make you take a deep breath, rethink and retry. right now, I am still in the same place I was a few months ago, but now, I feel happy, like I have control of things and am in charge of my own destiny, no matter my limitations.

Anyway, long enough and rambling now. (but then name of the blog suggests it)
Night

Horsing around in Camden

SSDD

I havnt posted in nearly a month. Its odd, I remember the days when I could post a couple of times a week. These days, the weeks seem to escape me. Its not that I dont note them, I cherish them and all I am able to do during them.

I guess my lack of posting really began when I changed my nebuliser machine and had more medication added. I used to be stuck on my neb for hours, so used to type whilst on it. Then I upgraded my machine and it was wonderful, as I spent a lot less time on it. However, the downside is that I have to hold the 'mouthpiece' whilst it is running, meaning that I only have one hand, making typing difficult. I also had my meds changed, which leaves my hands very shakey, again not ideal for typing. But all that aside, I needed a break. This is the area that I use to get things out of my head, to work things through in my mind. Yet, I didnt want to always be posting the same things over and over.

But the truth is, that is all my mind is focused on. There are times that it slips away for a moment, but it back the next time I move, the next time I cough, or when the post comes with yet more appointments, its all back in the fore front.

I met with my surgeon a couple of weeks ago. I wanted the truth, the whole truth and nothing but the truth. I told him that I was getting tired and my hope was running seriously low. For months now, we have been doing monthly laser therapy. This means traveling to London (200+ miles each way) and checking in on Monday afternoon. There is usually an array of tests, just incase, bloods, xrays and other such delights depending upon my obs, such as ecgs. Tuesday morning, its up, showered, and changed into surgical stuff. I see two members of the anesthtic team and the full ENT team before 9am. At some point during the day I will be taken to theatre, where I will undergo a general anesthtic (full knock out.) This can last anything between 30 mins and 3 hours depending upon what they find, though I also ended up with the anestitst for about an hour whilst they dig around trying to find veins. I then spend the rest of the day back on the ward, usually with higher dose painkillers these days due to the damage and some oxygen to try and clear my system quicker. Wednesday morning I get my results and see the regular ENT team about 9am. About 10am my consultant usually comes to discuss things further. And once anti biotics have been decided upon and I feel up to it, I begin the hike back home, through central London trying to avoid peak hour on the trains. For the next 5 days, I am pretty sleepy and not really with it, reallying a lot on painkillers once again. After that, I begin the downward spiral as my airway builds up where it has been lasered.

Its not an ideal cycle and I find that I get very little benefit out of it.

But my surgeon confirmed, that right now, we are getting shorter and shorter on options. The usual procedure that has a 99% success rate has failed me 3 times now. The experimental surgery has not helped at all and taking any more rib cartilage is out of the question now as I get server pain at times where they have taken so much. Over the next 10 years or so, that may ease off, but its going to be a slow trek.

So where do we go from here? and how much am I actually up to going through?

If we stop lasering, my airway will close up. I will become more and more limted in my ability to do things, eventually setteling at a point where I would be breathing through about a quarter of my airway. But, pretty soon after we stopped the laser, I would lose my voice. I have done short periods with no voice and it is hell. The simplest of things become impossible. Ordering drinks at the bar, buying stuff in most shops, conversation, shouting for help.

But what is the alternative?
My surgeon is talking about trailing some stents to hold the airway open. I have tried them several times, the last time nearly killed me. My body scared up around the stent and I was found in full resperatory arrest, waking up several days later in ICU to find I had narrowly escaped without brain damage. Every other time, I have had them, they have caused major issues, many prolonged stays in hospital, many ICU visits. Am I up to trailing them again? Can I cope with a prolonged stay in hospital? It was only September that I got home from a 3 month stay, if that happened again, what then? I love the staff in the hospital, but its not home and there is no real conversation, especially when everyone you know are still miles away.

I have tried talking to my mum and such about where things are at. The hardest part, I cant seem to make her understand where things stand. She seems to think, that I should just quit the surgeries for a few years until technology is more advanced. But without surgery, things will get worse until I eventually cant keep up.

My body is already complaining. Almost constant lung infections, are taking there effect. Flying now causes my lungs to bleed. Luckily its only small bleeds, but it each time seems to get worse. And the last thing I want to do is damage my liver with too many antibiotics and having to spend weeks on IV meds.

So, whilst trying to decide where to go now, searching for another miracle, all I can do is make the most of what I have. And I have been trying so hard to do that.

Last month I went on holiday with a friend abroad. Tonight, I have just gotten back from another holiday abroad. I am spoilt and truly luck to be able to do all that. At weekends, I make the most of being able to spend time with my niece. We do simple things together, meals out, cinema or just curling up on my bed together and watch tv. Such simple things and yet they bring so much pleasure, comfort and happiness. I truley treasure them, even if it takes me a few days to recover.

I meet with friends where possible and I am making plans for the next few weeks, for christmas, for birthdays and for future holidays. All of course, going around the admissions.

And so, though I may go on far to much about the same subject, right now it effects everything I do and yet there is no escape. But that is not to say that I am not living. I am eternally grateful to everyone who has helped me get to this point, the medical people, friends, family, donors, researchers. I know that I am lucky to be here and believe me I do know it.

Follow up

First off I want to say thank you for the comments on my last post. The last admission was a scary one and I found myself pretty much having to vanish with all my energy into making each day last till the next one. Since my transplant, when I spent weeks learning to even sit up on my own and months redeveloping my muscles to walk and stand, I promised myself that I would never get to that point again. It was why, even when ventilated, I insisted on walking around my bed space with help) It was why I forced myself to get moving right after this big op. But as things dragged on, and days became harder, I found I needed my energy just to stay awake long enough to keep myself hydrated and the rest went on the complex task of breathing. I have lost a lot of muscle during this admission and as a result, things are very tiring now. I am building it back up, but it takes time.

and so, since getting home, I have done very little with my time. Not to mention, that I have hospital appointments nearly every day. And next week, comes the journey to Leeds again. Not that I am complaining. I will always stay under my orginal transplant team, as long as they have me. They know their stuff and I trust them. 

But things have changed a lot. from new meds and injections, to just breathing. Right now, I have to give myself injections every day, which is no great hardship in the grand scheme of things. The more irritating thing, is that I have to have my tube restitched to my neck every few days. Not only does this equal pain each time it is done, I have to wait on my hospital ward for a doctor who feels confident enough, to be free to put the stitches back in. This often takes about 4 hours and I hate sitting in hospitals.

I am not complaining, Not really. Breathing is still pretty crappy, but I am back in, less than 2 weeks and so I refuse to complain too much as I am kinda enjoying the fredom. Not to mention there is tons I need to catch up on at home. Things my parents cant do. Anything to do with wiring, internet, printers, phones and tv ariels. I mean, my mum is 65, luckily still in remission, but has server arthritis and osteoporosis, yet, she is still up a ladder painting the kitchen celling. She shouldnt be doing that and I wish I could take over. But my lungs and throat wont take pain fumes and I cant bend my neck the right way. One day, I am going to be in a position to take care of both of my parents. I have to be. I am the only one who can. But whole other story for a whole other day.

No, what I want to get off my chest tonight, is a much more annoying and harder to fix problem. In the last few weeks, I have had what I would class as 3 bad flashbacks. Now thoughts kinda float into my mind frequently, and I have the whole exaggerated startle reflex. Nurses hate waking me up for medication and treatments, as I almost jump out the other side of the bed every time. But these flashbacks have been vivid ones. Not to the point where I cant tell the past from present, I dont think I will ever have them, I have played the past over far to much. But the kinda that I can see happening like a movie in front of my eyes. I can still see the present, but with the past overlaid on it. The kinda that plays over and over and I cant block it out no matter what I do. Music, films, closing my eyes, counting sheep, ignoring it, nothing stops them. Its tiring and leaves me wanting to scream. I often find myself literally shaking and very stressed, just trying to get through it.

I havnt had any as bad as this for about a 18 months. So to have 3 of them in recent weeks, is a little frustrating. I am hoping I wont get any more. I really dont want to slip back into old habbits, nor start dissociating again. I cant afford any more scars, wounds or infections. But I do find myself drawing away from people, preferring to spend time alone once again. So If you text me and I dont reply, its nothing personal, I have probably dumped my phone some place and have not yet had the desire to go find it. I am a typical introvert who was bought up to be polite and social, yet I slip back into old ways when stressed or energy levels are low. 

Anyway, sleep calls so enough ramble.

The 9 1/2 week hospital saga

Wow a whole month between posts.

There are a lot of reasons for it really. I mean I doubt anyone reads here, but it was always more for me anyway. Partly that I have so much to catch up with that it became a tad overwhelming. But also because, I used to write last thing of a night, right before I went to sleep, to allow all the thoughts to tumble from my mind. But I am back on my nebs and so by the time I run them, my hands shake to much to type.

So I am writing before I run them. I am going to do a quick run down of hospital, though my orginal post is half finshed, if anyone wants to read it, I can still publish it, but as I say, this place is mostly for me these days so I still have it in draft.

Hospital was tough. I was finally discharged last week, making my stay just short of 10 weeks. It was one of the toughest periods of my life. There were times when I was too weak or breathless to be able to even shower or make it to the bathroom easily. There were times when I threw up so much that I thought my stomach was leaving my body. There were times when I didnt think I would leave the hospital ever again. Those I admit where some of my most scary days. When breathing becomes such a chore that you wonder how much longer you can manage it unassisted. There were times when I pushed myself so much, that I had to sit on the floor for almost an hour to recover, then almost couldnt get back up off the floor. When I pushed so hard that I was in too much pain to walk for almost a week. There were days when I wondered if I should call my parents to let them come visit before time might run to late. There were tears and fights, but also joy and pride. It was one of the most emotional 10 weeks of my life and its not over yet.

Waking up from surgery, I expected to hurt, but I didnt expect to not be able to lift my left arm. The IV line had tissued during surgery (a common theme these days) nobody had noticed the line for some time and so my arm had swelled to 4 times its normal size. Given that my leg had been split from waist to knee and I couldnt move my neck, having my arm out of use made movement very tough indeed.

But I got myself moving, quicker than they had anticipated but I wanted the catheter and feeding tube out and I wanted to get as much movement back in my leg after them taking muscle out of it as well as skin grafts and finding the cartilage. I did all that and all was well.

But then my neck swelled, my oxygen sats dropped to 82% which for me is a huge thing for me and I looked like crap. I was put on 4 differnt types of antibiotics, but showed no sign of improvement. After late night draining of my neck, at 11pm on a saturday night, results came back that I had a bad hospital accquired infection in all of the areas that had been operated on. There were only 2 antibiotics that would get rid of it and I was allergic to one lot of them. I was put in isolation and begun them. The first 4 days were horrific. I couldnt even keep water down. Everything hurt from throwing up and the lsightest movement had me retching again. I was on IV fluids and injections for the nausea. But they began to worry about me not absorbing my meds as they wouldnt stay down either. At last after almost 5 days, my system began to adjust and the nausea eased off. Over the next 3 weeks, I had to cough all the infected material out, as the swelling slowly began to go down.

Then there were problems with the trachesotomy that they put in in surgery. It was butted into the back wall of my trachea, so not only could I not breathe through it, but it was wearing a hole in my trachea. After a few attempts at fixing it, it was taken out.

That night, I coughed out 3 pieces of cartilage that they had planted in my neck. I cough a lot anyway, jous of crappy lungs, but brining out the cartilage, was something else. The drs face was priceless, when I walked to the Drs room, knocked and asked to see him for a minute and showed him. You could see the cogs whirlling on what to do next, and checking I was breathing ok. Lots of treatments later, where I had to run almost constant nebs all night long, and my coughing eventually settled. For a while the Dr sat at the desk outside my room. Everytime I coughed, I could see him watching me, waiting just incase. It was both scary and reassuring at the same time. I owe a lot tot hat Dr, for although I didnt freak out, it felt like a team work thing. I didnt freak, because I trusted him. The Dr on nights the following week, would have spontatniously combusted if presented with the same scanrio and I dont think I would have felt as safe. Anyway, my surgeon was phoned at home and informed and such.

The following night, I coughed out some more cartilage, meaning at least 4 out of 7 pieces were now outside my body (though I think it was more so 5 or 6).Things were not looking as hopeful has they had a week earlier.

I had been fitted with a PICC line, that ran up my left arm to my heart for IV meds. A week after the cartilage insadence, just when things were starting to calm down, my arm began to swell. A scan revealed I had a DVT. If that isnt bad enough, I am allergic to the meds used to treat blood clots. I was started on new meds that nobody had heard of before and the line was removed.

It was noted that one of my eyelids had dropped and that my pupils were differnt sizes. I was diagnosed with Horners Syndrome, caused by damage to one of the nerves in my neck.

One morning, I somehow ended up getting my IV line flushed with salbutamol, a med that is usually only given as a neb. My heart rate spiked to 210 and I spent the following 24 hours on a heart monitor.

But, worst of all, out of all of that, was I developed Surgical emphasisma. Now I am no stranger to that, it is where air is able to leak between the layers of tissue in the skin. It causes swelling in the skin, that when touched crackles almost like rice crispies. I have had it before, but this was serve. It ran from my waist to above my ears. It swelled one of my eyes closed. I wasnt allowed to lie down and it was very painful. I had all my painkillers increased and was put back on the ketamine.

I was really begining to struggle to breathe and so, while I was awake, on the ward, one morning, I had a mini trach inserted into my neck. The following morning it was switched for a regular trach. Never have I had them put in while awake. It was quite the experience.

Surgery had to be held off because of the surgical emphasima. Breathing was still hard and I found my days filled with sitting still, whilst on oxygen and running so many nebs that I dont know how my lungs didnt swim out themselves.

Eventually I went back to theatre and things mainly looked swollen. But the trach was secured and for now, I breathe through a 7mm hole in my neck, that gets clogged because of my chest issues. Things are not very comforatable and we have no idea if the surgery will work at all. My orginal trachea had to be cut open with a bone saw, which is very unusual, the first time my surgeon has ever had to do it. So it was a mess to begin with. So time will tell.

I also developed a Staph infection in my blood system. requiring more IVs. This was discovered the day the Drs were discharging me. It is a nasty infection that can wreck the heart muscles in a mater of hours. So I had lots of heart scans. I was, disapointed at not being discharged as I had become increasingly home sick. I had told my parents not to visit as i thought I was getting out. When I didnt, the days began to drag, with no visits to break them up. In fact the last couple of days, I spent trying to hide my tears as I just wanted to get home.

Mixed in with all of the above, were fights with nurses who wouldnt listen, meals out and take aways delivered to the ward, good friends visiting and making friends with some of the nurses, I gained the trust of a Dr who I never thought I would, he even talks to me now like I am human. 9 I have had issues with him in the past) and other Drs, who gave me hope again and made me believe, if only for there shifts, that things could still get better, that i could make something of myself again, once my breathing was fixed and to him I will always be grateful, he lit a torch, in the darkness.


I saw some amazing sunrises.

Had the best picnics and time away from being a patient as possible.

And confirmed what I already knew. That I am under the best possible surgeon and the best possible team. Even if this never works, I will be forever grateful and in debt to them for there amazing skills, compassion and understanding. Not to mention their ability to not scream in frustration at the 10pm ward call they would get most nights for me, to fix broken cannulas, or if I had thrown another temperature, or coughed out some more cartilage. I am also thankful to the people who visited me and kept me sane, the ones that sent me gifts and those who well wishes I received via snail mail or online. I am a very lucky person.

Thinking

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hospital chronicles

Things have settled. I feel calmer.
The last week was difficult, I know I could have handled it better, but that dosnt mean that I am not proud for how far I have come in actully handling things at all.

I knew I needed the antibiotics.
My doctor knew I needed the antibiotics.
But the ward doctor didnt think I did.
the problem partially comes from my hospital records being spread through so many various hospitals.
Even my local hospital is split into 2. I see my doctor in clinic in one part, but he admits me to the ward in another part. Simple enough, but the notes he writes, dont come to ward.
The other issue being that my body dosnt do anything normally.
We know my lungs are infected. We know the infection is wrecking havoc on my body.
Yet my body dosnt show the usual signs like tempertures or raised white blood cell counts.
Our theory is my body is just supoer friendly and welcomes every bug and germ in with no question. Practically sits it down and offers it tea and cakes, rather than attacking it and telling it to get out.
By this point, we know my body is odd.

So anyway, the doctor who dosnt know me, wants to follow what he has been taught as a doctor. So he didnt want me on the meds, but at the same time, he wasnt prepared to take responbility and discharge me. He was suppossed to get in touch with my doctor, but who knows. 2 days later, I was still sitting there feeling like crap, stuck in a small room all day, going crazy while it felt like no one was listening to me.

It was hard, because I have to trust that doctors know best. But to then say, well wait a minute, that is not what is planned, took a hell of a lot of stress.
But I did it. They still wouldnt listen, so I packed my bag and told them I was leaving the ward. That they could phone me when  they had made a descsion on what to do. Within 20 minutes they decided that I did need the meds and I was once again all hooked up.

Just annoying that it had to get to that point.

So after having about 4 of these in 2 days, not to mention at one point having to have fingers taped to gether to support the needle.

My arms are pretty messy and I look like I have been street fight. The first rules of fight club, there is no fight club.

So a nice doctor took pity on me (was requested to and is being ultra nice to me to make up for last week) and fitted me with a long line. Which is basically an ultra long needle that is threaded in to a vein in my arm and goes right up into my shoulder. Making it a little more durable that the silly venflons.

I also managed to get out for a couple of hours the other day(Who am I kidding, I treat this place like a hotel ha. When things are going ok, I generally get all my treatments and tests and stuff done of a morning. Then after my afternoon IV meds, I go home till my night time ones. Comes in handy living close to the hospital) But, on this occasion, a friend came to visit from Wales. It was nice having a catch up. Though, she was a little taken aback that she came to visit me in hospital dn I then demanded that instead we went to the pub. haha.

Alas, it was nice to catch up. She was the same throat issues as me and it is just wonderful sometimes, to be able to say something and know that someone truly gets it. That yes, I can look good and go out for a couple of hours and nobody would know any differnce. But there is a difernce in that it takes hours to get to that point and I will need the next couple of days to recover. Alas rant over. Anyway, there are negatives and postives to both of this, but I shall leave that for another night.

I havnt seen her in a while and she commented on how long my hair had gotten. Its odd, I hadnt notice until then. But then, I had actully striahgtened it, something I have not done for about 2 years.

I have not had hair this long since I was about 16. Its odd and it annoys me but I love it at the same time. Though, I think its time for a colour. Nothing to major but watch this space I guess.

anyway, super time then sleep I think. If I can sleep. I made the mistake of sitting on my bed at home at about 4 this afternoon and the next think I knew it was 8 oops. (Just for the record, the yoghurt is the tastiest. nom I do love meringues.

Home.

I am home.
My typing maybe awful as the nebs are wrecking havoc on my hands.
Its been an intresting addmission.

I have gone in at 3am,
I have gone in at 5pm.
I have gone in heels,
I have gone in in pjs and slippers.
I have slept all day,
I have stayed awake for hours.
I have added nebs,
I have taken away nebs,
And then added some more nebs.
I have been to physio
and gone through lots of cannulas.

I have seen doctors and nurses, and tons of other staff.

I guess now I am out, the real work begins. Its easy to keep up with good routines, when you are sitting in the same room all day, but to put it in to real life, is the next step.
I know that I need to work hard to keep my health where it is. That between trach care and now so many nebs and such to keep my lungs going, it is like a full time job. But that is why I cant work at the moment. And I need to try to stop berating myself for not working. Right now, not losing any more lung function should be my biggest goal.

Its easy in a way to take things for granted. That the tube I have in at the minute, is working and I can breathe. I am still breathless on exertion, but for that I am thankful as I am still breathing and can rest. Unfortunly the dreaded axe still lingers above my head. I know that this time now, is easy, but how long do I get before the longer tubes begins to scar, is another question all together.

So for now I need to make the most of breathing. That I can do, though I still need to fit treatments and rest in.

I can get my neb time down to 3 horus a day. If I hadnt of upgraded my machine the other month, it would be 8 hours a day. All that extra time has to be a bonus.

So for now, speaking of rest...

Nebbing hell

I think I am going to end up hating this neb routine. I am still in hospital and I know how much the nebs help my lungs, but nebs tie you down for a while and I hate having to do them all the time. They do help and so I will continue to do them and attempt to save my lungs from giving up on me, but that dont mean I have to like them.

This is my morning and evening set up. It may change once I get out of hospital, but for now, 6 differnt lots just seems like a lot. 18 nebs a day on a day when I am well. Its time consuming. But we shall wait and see.

Should be home tomorrow. Always a good thing. No more IVs at least for a while.

Which is a great thing as I have a big custom order to get finished. This is one piece I have been working on tonight.

I actually really like it and think that my talent has progressed a lot. Of course the hard part is, how much to charge for items like this.

Anyway sleep times.

Dancing?

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

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

And tonight's escapeds?

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

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

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

Gotta love hospital bathrooms.

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

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

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

late check in

Its 3am, im running nebs, absolutely shattered but just got in.
And by in, yes I do mean to the hospital oops.

stylish huh.
More tomorrow, as I have to be up early for IVs followed by ward rounds.
current IV placement, back in my arm yay.

Move on

I am still in. I am actually kinda enjoying the rest that comes with being in at the minute. Being able to sit still for long periods without having to be doing things. Sleeping isnt great, I have to be awake early for them to set my meds up and then they like to continually wake you up throughout the morning for things like breakfast, meds, ordering tea, physio, all the fun stuff. So I am still pretty whacked out.

Today I have a new cannula. They are actually behaving pretty well, in that they are lasting a couple of doses at a time, which is great.

Boo!!

I usually try to be as compliant as I can while I am in the hospital. Doing all my treatments and such, but I try to fit them into the morning. Then after my afternoon IV meds, I go home for a couple of hours. I live close to the hospital and have been loving the walk to and from each day. The leaves crisp under foot, the chill in the air that allows me to breathe and just the chance to clear my mind.

Yesterday, i thought that the doctor rounds were in the afternoon, and so i went out in the morning.  Ended up getting back late and missed all the doctors who came to see me, including the one about putting a port in for me. oops. So got to sit tight and wait on that one now. Also got to try and work it with the night staff on Thursday night to let me come back to the ward at a ridcolously late time as I am meant to be going to the midnight showing of Breaking Dawn in the cinemas. Hopefully that will work out.

I am trying not to be too hard on myself. It has been a difficult couple of weeks and I dont think I have given it much thought. There was the whole oo I might go to sixth form, but was then in hopital and couldnt make it to the first few sessions so put that on hold, there was the whole, oh my airway is now scaring even more and now has collapsed. The loss of my voice, the being sick whilst away and then the can i cant I make it on holiday dilemma  that still has me wound up. Its like it is a constant battle with my health sometimes, but most of all, I dont want to lose sight of who I am. However, each blow feels like a set back and each time it takes me a while to get over the setback and move on.

I now have a plan for moving on. It is in its very early days as in, I am only just researching. I am considering doing a distant learning course. Now part of the good bit I was hoping with going back to college was the social side, I wouldnt get that with an open learning course. However, I would still get the focus and achievement. I am thinking of studying for A level Biology. I have the money saved that was for my holiday, so that would be how I would finance it. It would mean if I were unwell one week, it wouldnt matter to much.

So why biology. Well, I still have that conversation with the doctor stuck in my head when he said I should train to be one. If i got my A level biology and then A level chemistry  I would be all set to apply to uni. Ok there is no way I could do uni at the minute, but by the time I got both qualifications, I am hoping I would be feeling better and able to breathe. Its still just a thought, but even if I never made it to uni, the biology would be helpful. I have been doing a little more work on the site I started in relation to airway problems. I have been trying to do one piece of work a day for it. I havnt managed it every day as things get in the way such as side effects from the IV meds and just not feeling up to it. But it is all progress and as sad as it may sound, I feel a sense of pride with it. Kinda a ner ner look what I can still do. Time will tell I guess.

So yep, that is what is running through my mind at present. That and many other things like stress of builders and not knowing what I can do to help with a home situation, but thats a whole other story.

And now my wrist is hurting so I shall take that as s sign to stop typing before I ruin another cannula.

Tonight's menu

It just occurred to me, that I dont think I posted any pictures of my blanket. When I was in Florida in June, I fell in love with a sort of patchwork quilt. I adore patchwork and have a bed spread on my bed, but one day hope to have some one of a kinda type ones, maybe even get around to making my own one day. But anyway, this one, was light, but I fell in love with the quote on it.

Family ties are precious threads no matter where we roam, they draw us to the ones we love and pull our hearts toward home.

Since coming home, it has lived in my hospital bag. It smells of home and fits perfectly on my bed when in hospital. Plus, I hate getting in to bed of a day, makes you feel like you are sick, so having it on my bed, not only reminds me of home, but gives me something to snuggle with of a night. And everybody comments on it. I could have sold it at least 10 times.

Mt cannula failed again and so had to be resited. Its not in the nicest of position and means and work with my hands has to be limited, but it is in and work which is always a good thing. I told the doc who put it in that he could come again, as he did it in half the time it takes most to even find a suitable place.

Least on this ward, they let me stay in charge of my own meds, which saves waiting for the nurses to figure them out and such. It makes sense for me to do them as I do them at home and dont like to get out of the habbit. The problem however, is that the drawers are getting to the point where they need to be bigger ha.

My everyday meds fit, but I need more space for dressings and such really. Plus they are discussing trying me on two new meds, which will add in as well.

On the topics of meds, tonight for supper we have an assortment of little coloured things.

The top syringe is my pain meds. The other two are used for mixing up nebulised solutions. Nebuilsers are basically liquid medication, that are put in a special machine, that turns them into mist, kinda like steam, so I can breathe them in. Thankfully I have a new machine, else what I have on this pic, would take about two hours thiry mins to run through. My machine gets them through in about 40 mins instead. My nebs of generally 4 times a day and the tablets twice a day.

And to follow up for desert

we have nice IV infusion of antibiotics. This is the good stuff, and what I am actually stuck in hospital for at the minute. But, with a bit of luck, it will all help and I will feel much better then I get out of here.
so yay.

Through the looking glass

They finally remembered me.
Yup, you guessed it, I have now been admitted.
Which is probably kinda good as the first lot of my culture results came back in (take a sample of the stuff I cough up and grow it in a lab to see what's in it.) And I have high levels of staph bacteria in it. Have to wait an see if anything else grows.

After a bit of faffing about, they finally got the cannula in me and I am now on IV meds. With a bit of luck, my chest should start clearing up a bit now and hopefully my energy levels will rise. Today I just feel exhausted, but it is still a big change in routine. I am never awake at 6am for example when they come set my first lot of meds up. Not to mention the barrage of tests and physio. But, hopefully this will improve things.

It felt so strange coming on to the ward the first time. The ward is an odd one, its divided into two sides, with rooms down the middle used for the nurses and bathrooms. I am usually on the right side, but this time I am on the left side. The room is identical, but mirrored. So everything is the wrong way. Through the looking glass type of thing.

I have also had my MRI scan. The tube was ok to stay in as I had it changed to a plastic one last week. So after a couple of phone calls to check, everything went fine. I would have had problems if i had still had my silver tube in. They are not the nicest of scans, like being in a small box, but I mostly just had to lie still which was fine by me. They put headphones on me and strapped me down, which was a bit of an odd feeling. Usually they would talk to you while you are in the scanner and ask if you are ok, but I could not answer as my arms were pinned down, so that was different  Over the headphones they had music on, a queen album and the first song playing was we are the champions. Think my organs are trying to tell me something?

Its amazing how different things are on this ward. Most of my time in hospital is spent on surgical wards, but this is medical. Surgical, the staff kinda see you, help you get better, then send you on your way with the view that things will continue to improve. Here a lot more thought goes into things, which is making me feel better already. There only little things, but when someone else brings them up, you dont feel so much like a fraud or a complainer.

A small example is we were reviewing my medication and discussing nebs, rather than just saying do this one and add this one, they were actually saying things like, we dont want to just add them in as that ties you up for a lot of time running the treatments, leaving you much more limited during the day. Another member of staff was discussing with me about mixing with people outside of my immediate family. She is the only one who has really ever asked about how I get on at home and if I have a social life. There have been many little things like that. Asking about tiredness, pain, ability to do things. It makes a huge change and I already feel much calmer for it.

This is going to sound odd, but my room here just looks so medical based. Yeh I know it is a hospital room, but so much has changed since I was last here. My stuff is mostly stored behind cupboard doors at home, but here everything is in one place and on sight, si I guess that adds to the feeling. Between my IV pump and humidifier  My nebuliser and addition items to run nebulised anti bitoics. Suction and trach stuff such as dressings and ties. Plus medications and the likes. It kinda makes me reliase just how much work I do put in to keeping well. So when I berate myself, I know now that I am still working on things, I am doing what I can.

Ahh

Remember that admission from like 6 weeks ago? The one I chased up 2 weeks ago and they said the lines had been crossed and they would get me in asap? Well I rang today to see what was happening with it. After a few phone calls of, its not down to me, ring this hospital, no its not down to me ring the first hospital again and being passed back and forth, the only answer I have been given, is that nobody knows about any admission again. They are going to call me back. That was at 10 am. Yeh maybe I should just give up on this. But then, I dont even have a follow up appointment as I was being admitted gah.

The other problem with it, is that the same docs have organised an MRI. I need the MRI to see the conditions of my blood vessels due to previous clots in my jugular. They are hoping to use this information to fit a port in my chest, allowing easier IV access. All sounds well and good. However, the problem lies, in that I have a tube in my throat, one that right now, can not be taken out safely. Last MRI I had, I had to have a ENT doc with me, to take the tube out for the scan and get it back in as quick as possible. That was just a neck scan that could be done in less than 5 minutes. This time, it is going to be a full chest and upper body scan, which takes much longer. If they do take my tube out, it can only be out for a maximum of 10 minutes, given my bodies love to heal everything quick. I had hoped I would be admitted by now to explain all this to them, rather than trying to vocalise on the phone. The scan is this week, so time is getting a bit tight. Alas, we shall see what tomorrow brings.

In lighter news, we have builders in at present, extending the house. They are nice guys, even if one does wear a silly hat. So things are a little up the wall, but hopefully it will be worth it once everywhere is built.

My niece is here also. I treated us to a candy king (Pick and mix) the other day. We have them every so often, but we more so enjoy playing candy king tetris haha. Basically, seeing how much you can fit into one cup. Well you pay by cup size, so it makes sense to squidge and pack it tight. I won as I got 50g more than her in mine. I like being a big kid.

We also went out with my parents over the weekend to some garden centre type places. It was very festive feeling as everywhere has their decorations out. Plus, right now the house smells of christmas cake. Mum usually bakes hers in September to give them time to mature, but she is late this year and so has been baking today. I dont like christmas cake, but the smell always reminds me of spending the day baking with her. 

I do love the Autumn months. The way the world changes colour before your eyes. I hate being cold, but i love the cold. Its so much easier to breathe. Not to mention, you can wear almost anything, but when you leave the house, you put your comfortable boots on and a big coat and suddenly you look tidy. I also love the warmth of pulling a hat over your ears when leaving the house.

longun.

I complain a lot about sleeping too much, but yesterday, really took the record.
I think I spent a grand total of 2 hours awake in the entire day. Dont get me wrong, I crammed a lot into those 2 hours, including an hour on the loo (TMI?) and time to consume half a bowl of soup, whilst falling asleep enough to tip the other half a bowl all over myself. Its a good job I am unable to eat my food hot, else that could have turned nasty.

Something in my body is still complaining, my stomach is still being a diva and demanding attention, so I am guessing there is something lingering there. It seems so hard to keep myself hydrated, especially when silly hospitals keep me nil by mouth for a whole day at the same time as my stomach refuses to keep anything inside.

hmm, did I tell you I was home from hospital? It appears I did, though I didnt mention that, I actually kinda walked out of the place. oops. I say kinda, they said I go, I was just waiting on meds. The night before they declared that they had lost one of my meds, this was right at the end of visiting at 8pm, I was prescribed that one for 6pm :/ My parents where with me and so they had to go home and bring the meds back. The next morning, guess what, they had lost the med again.

I saw a nurse for painkillers at 4am and the next time I saw anyone, was 11:30am to say I could go home. I asked for painkillers and was greeted with, we have lost your meds, I did tell you. I shouted some, well as much as you can the day after surgery. They should have had at least some of them and my pain meds. In the end I got my bottle of morphine off them, to take home I add, not to take now. I was in agony and very rapidly losing my cool, so I took a big mouthful and tried once again to get the meds that I had taken in with me. She said she would go a look, but by this point, pain and tiredness had worn me down and I could feel tears forming. I didnt want to cause a scene, so after 20 minutes and still no sign, I left the ward and went home. Took all my morning meds that were due at 10am inc anti rejection meds. I thought they would call at some point, but nothing. Least its one less thing to deal with and hopefully I wont have to go back any time soon.

Sometimes it just feels like my body is giving up on me. Like it has said enough is enough, I refuse to do anymore work. I just wish sometimes that people would listen to me.

I tried having a conversation with my main surgeon last time I was in. I told him, that I think we needed to start looking at what stopping treatment would mean. That I would go for this next surgery, but if it didnt help, that I dont want to go much further. I have never seen a surgeon squirm so much. Kinda funny really, they can deal with all the grossness of the human body, but mention death and they are out of there. You know what his reaction was? He said lets see what happens and then shook my hand. Really shook my hand!? I havnt shaken hands with him since I first met him over 2 years ago. I actully wrote an entry on this on my ipod, but it looks like it might be lost, as I have lost my ipod. :/

I guess he sees me in clinic and sees how I get on with things. But he dosnt know my life, he dosnt see where the quality is, or lack of it. That I am 26 and have no friends. That the friends I did have, I put to much on, that they cant give me a simple no when I ask for something and instead make excusses, that are see threw or fit other things into the time they were to busy with other stuff in. That just makes me more bitter, to feel lied to and so I stop caring and without my pressure I am easily forgotten.

That at 26 years old, going out, means being with my 64 year old mother and using a mobility scooter. That to walk around a local supermarket, means I go home and sleep for 3 hours. I dont have social interaction, talking is hard work and painful. That the time I am awake is mostly spent fighting with doctors, hospital and secrataries on a power trip, trying to get done what I have been told to get done. That most evenings, I spend fighting with myself. My body saying take some painkillers, let me rest and escape this, whilst my mind says, dont touch them, i am not strong enough to deal with the side effects today.

Its like when you bargain with a small child. Child says, I dont want to eat my veg. You say, well eat the carrots, 2 sprouts and a piece of brocilli and we will call it quits. The child replies how about half the carrots, one sprout and no brocilili. Thats what it feels like inside my head some nights. Only some, other nights my body wins out and I escape to the dream ladden land of nod.

But I would also tell him that I live in fear, from the time I wake up to the time I go to sleep. Its always there. Sometimes in the forefront, sometimes lingering in the back, but always there. Death by breathing issues, is never romantic or poetic, its not peaceful and pain free. Not how they display it on tv, where you just lie there, sleeping a lot and not really aware. Instead you feel the pain, the exhaustion, you chant over and over, in and out, in and out and whilst it seems so easy, every part of you hurts and cries with pain. And it goes on for a long time. Your body adjusts and as you are sitting still, you need very little to keep you alive. Just in and out, in and out. I dont want things to be drawn out. My familiy could not cope with that. They already struggle. There is no support network in place for them anymore. Just the two of them. Also like me, they have cut ties with the outside world. My brothers and sisters have all gone, in fact my sister got married this week. Funny isnt it. But we were not the only ones at the wedding, none of her children were, only one member of her family was there.

Yeh, so you can tell my mood tonight. Tonight, my body complains again. It wont allow me to have more than 3 ok days in a row. Its tiring and painful and my ability to cope with it all is getting thinner.

Breathing is totally under rated.

I feel amazing! I just wanted to put that out there really.

I am home. It went as expected, in that I was discharged from one ward whilst I continue to wait for a bed on another ward.

But in theatre, they basically moved the crap that was blocking my airway. My airway was still a little tight and so the new trach that we wanted to get in, wouldnt go. They knocked me out in the end, to force the muscles in my neck to relax and so that they could force the tube in. Its a little on the painful side, but the good bit, being, that the tube is in and its a whole 4mm longer than my other tube. This means that it bypasses where the scaring keeps building up. Dont get me wrong, I am not under any illusions that it will last forever, but if it holds out like the last one, I should get at least 4 months before it begins to tighten. And its saturday now, I went to theatre on Wednesday and the pain is lessening already. I have only needed 2 doses of morphine today so yay.

Its silly how you adjust though. To run up the stairs for something, get the top and think, hmm I am still breathing. To sleep of a night and wake up feeling like I have slept, not to mention, not waking every hour to unblock my airway. Its like I am suddenly a million times better.

Which now means that running through my head, is the question, should I go away? On one hand it makes sense to, I can breathe so well at present and I still really want to go.

But on the flip side, I still keep getting sick. My body is still trying to kick up a fuss about something and coughing fits still involve me losing my stomach contents.

I think mum shed the best light on it earlier. She said to me, last year when you went away on your own, you were 100% sure you could do it, you were well and everything was staying within set limits. This year, there is doubt and part of me wonders if I could manage it all on my own. Not to mention, would I enjoy it, if I was constantly monitoring the situation. I know she is right, that it is the best option to leave it for now. But part of me still whispers, make the days count.

I have a good feeling about the next op, so perhaps, I can say, well if I wait, by next year I may be able to do it, with fixed breathing. Plus, it kinda scared me seeing my inability to cope with being ill last week. I knew I needed treatment, but the mere mention of going through A&E and the possibility of spending time on the assement unit in my big hospital, was enough to reduce me to tears. I am not normally like that. I normally grin and bear things and make the most and get on, not cry and want to scream.

So, the plan now, to try and get these damn IVs sorted and see if that stops the sickness and coughing. As soon as they are done, I will book myself into London for a rib cartilage harvest. I need the IVs first really. I know coughing becomes difficult and painful once they have been playing with my ribs and so, it would not be a good idea to go through that, whilst my lungs are still full of crud. So Monday, if no phone call, I may need to get on the phone and kick some butt again.

ohohoh, but now, I might not need any more hospital! I totally bought my own surgeon! Complete with a huge syringe and an xray. Im sure he can give me some new bricks or something.

Close but not quite

The title is in reference to where I am currently. I expected to be admitted and I have been, yet it was not in the imagined way. (this post was posted on Wednesday, but silly blogger put it in the wrong blog and I have only just realised.)

About 4 weeks ago, my chest doc said he would admit me for a course of iv antibiotics. As far as I knew, I was still waiting on a bed. I didn't chase it up too much as I know I get the most benefits from a 2 week add mission but I had my holiday to Greece planned.

I rang on Monday and somewhere messages have gotten mixed up. I was down for a surgical review as they are going to look at putting a port in my chest (a port will allow me to have better iv access, and but I will cover more of that another day.) so they forgot I needed an admission as well. After a lot of phone calls, finally I think it is sorted, however, I am once again on a wait list for a bed.

That takes me to yesterday. I spent most of night tossing about in bed and feeling generally ill. This is most unusual for me as usually once I am settled there is no moving for 12 hours. By 8am I had given up. I couldn't put my finger on but I felt rough. I often feel ill for one reason or the other, but this was beyond anything I have felt for a few years. I ended up with an emergency gp appointment though the thought of the effort involved in doing this made me want to scream. With a lot of encouragement I made it.

It was decided that it was another migraine, though it felt like more to me. I was given yet another type of migraine med as the last ones were not knocking it out and sent home to sleep.

By evening my temp had shot up, every part of me ached, coughing was agony and I could not keep anything in my body. Because I had spent most of the day curled up, and my breathing then began to play up to. I felt like death and I worried that things would get worse overnight. I just wanted to go to sleep, but my parents didn't think that was a good idea given how quick I had gotten ill. They have many memories of me going to bed with a cough and a slight temp, only to be woken up early in the morning with me needing urgent help with pneumonia.

They wanted me to go to a&e, but I couldn't stand the thought. My emergency department is in a horrible hospital that sends me loopy every time I go in. I wasn't in the best emotionally and so I threw a bit of a temper and refused. In the end we came to a compromise to ring my old ward and ask there advice. They told me to come over and they would get the on call doc to review me.

In short, they kept me in overnight and took me to theatre today. My temp seems to have settled and I have kept food and drink down. They cleared out my throat and changed my tube for me. The tube they changed to, after a bit of researching is longer than my usual tube, therfore it should fit through where the scar tissue is building up. It's temporary until my new tube comes in but should allow me to breathe better. The though at present it is very painful. I am doped up but that will ease of the next couple of days hopefully.

Tomorrow I should be discharged and then back to waiting for the add mission for iv meds.

Seem to go around in circles. Just odd, as I spent a full 3 months on this ward but have not been here for about 3 years. The room seems so familiar. Though they are nice rooms, very very big rooms.

Good things come..

.. to those who wait.

I wanted a break, some good signs, something to lighten the dark bits that were begining to feel heavy.

I got them, I got them so good and it was so worth the wait.

Im being cryptic, let me explain.

Recal the who visa fiasco, and telling a 12 year old she dosnt get to go to Florida after all? Well after a lot of begging, much frustration, many phone, some tears and almost going mad over it, I got an email on tuesday to say that they would issue my visa, but it would take 5-10 working days, I had 6.

As fate would have it, I was in London at the time and as a result of having an amazing friend, I was able to stay an extra night in hers and get my passport to the embassy early Wednesday night. (Thank you!! I owe you big time) They have rushed the visa through for me and I have just recieved message to say that my passport and visa will be back in my hands before the weekend. YAY!! Big time.

So happy. Though it means there is tons to arrange. From cars, to medication, medical equipment and supplies, a place to stay and insurance. I am slowly working through the list, though the travel insurance is the major hurdle now. It is about £500 for my insurance, and that is with the few companies that will insure me.

I was in London on Tuesday to discuss where to go to next with my surgeon. I really cant praise my surgeon enough, he is one fab guy. The purpose of having the trach in, was to prevent me spending so much time in hospital, to improve my breathing and my quality of life. So far, it is having the opposite effect and I am in fact spending more time in. So we need a new plan. He has a few ideas, and I will detail them in another post at some point, but in short, once I get back off my hols, I will be addmitted for a while in London and will lose the trach and try something new. It sounds odd that the prospect of surgery excites me, its not that, its the hope that surgery offers, that there is a chance, no matter how slim, that things can change. 

So I got my break big time. I kept the faith and I guess I am quite proud how I did deal with all the disappointments of the last couple of weeks. I think in a way, it shows how far I have come, not long ago, I would have crumbled and been a mess.

Oh and I almost got readdmitted to hospital last night. I feel very rough, cant stop coughing, my muscles and joints ache so much and I coughed so much that my tea refused to stay where it was meant to. I spoke to the ward, they made sure I was ok over night, I was really looking forward to a night in my own bed. Then I was reviewed this morning on the ward once again. Although I have a temp and look like death, I have only just finished IVs and I am still on oral meds, so we think its viral. That is good news. Just means, that I have to get plenty of rest, plenty of fluids and stay drugged up on painkillers. Whilst I dont want the painkillers, as they make me sleepy, I need them regardless, as its painful to cough, but if I avoid coughing, it will build up on my chest once again.

Hopfully, this will clear by the weekend. I slept the majority of today and feel better for it. so yay, good news all round. Keep the faith, the sun always has to show at some point. And I get to see lots of sun when I go away in 5 sleeps!!

But for now, I am doped up, hooked up to my machine and off for some sleep imposter Bear.