Survivable

I thought it was time to get some stuff off my mind again.  Writting does help, so does ignoring everything and pretending its not happening, but I know I can only do that so long before a giant exploision occurs (see I can learn from the past.)

The last few months have been awsome, and hard and scary and happy and most of all full of yet more memorys. I gather those close to me and pull them closer, it feels good, better than when I used to push them away. And yet there are times I still feel alone and times when I dont feel alone, but wish I was. Things get confussing. Like seeing concern, worry, panic and generally sadness cross a loved ones face, then I wish I were alone. I hardly panic, I figure there is no use to it, sure I get scared, but I seldom panic. Either I will come out of the other side, or I wont. The way I see it, I seldom have control over such things. Im not saying that everything is survivable, just that everything except the last thing is.

The last month has included two admissions and one holiday. The first admission, was to my usual ward close to home, well I say my usual ward, that is a whole level of another story. The first few days, they wanted me in asap, and the only place with a bed, just so happened to by my old usual ward, the one where I first had my trach put in, the one where I spent months of my life, the same one where I more than a few close calls and respiratory arrests. Its been along time since I have been to this ward. Mainly because its a surgical ward and there is very little that they can do surigically. Most the staff have changed, but still, I hated being there. The place is stepped with memories. I did expect more of the staff to come by and say hello, however, after I while I recall that actully last time I was on the ward, I kinda walked out without telling them. Im not a rebel patient and I do do as I am told, but I was in pain, had lack of sleep and was talking to a brick wall. I had come out of surgery the day before. Due to the amount of scaring I have in my airway, the slightest touch is agony. The drs are aware of this and for this reason I am on things like Morphine when home. I take it, I deal with it and get on with it. Being in hospital, the nurses are in charge of painkillers. I hadnt sleept well ( i dont do well on little sleep) and for 3 hours solid I had been asking for painkillers. I was pacing the room in tears because I was in agony. They were discharging, I was just waiting on them to print the paper work. I live a 5 minute walk from the hospital. So I packed my backpack, walked home, took my painkillers and slept in my own bed. I would bet, that they didnt notice me gone for a very long time. They didnt ring to make sure that I was ok or anything, so yeah. But anyway, i digress.

So back on my old ward, I hated it, the staff seemed distant, untalkative. I barley saw anyone and felt like crap sleeping most of the time. A few days later, I was back on my own ward with the staff I knew. Staff who think nothing of grabbing a drink on night shift and sitting down talking to me in my room. So I did my 2 weeks of IV antibiotic, with a continous infusion of bryicanyl. and I began to feel better.

All wired up

I am under strict instructions on the ward that I am not allowed to mix. I avoid the social areas and I go home of an afternoon. So I have now told the drs that I dont like this new pattern and I hope that I dont end up readmitted. The pattern being that I was addmitted in Novemeber, and december and now januaury all for IVs, all for the same infection.

Who says hospital beds are made for one.

The problem being that I seem to be on one big circle (gross stuff in the paragraph feel free to skip) Because of my throat issues, when I cough, the trach tube irriatates my throat, causing it to bleed. I cough up the blood, which eventually clots. A few hours later when I cough again and irritate the airway, the blood clod shifts, which is super sticky and hard to move. A labrous 10 min coughing fit usually follows including headache, dizziness and general exhaustion. Eventually the clot moves and I can breathe again, but then I cough blood due to the coughing and we begin all over. Though because I have a unatural airway, it is actually possible to block the tube, which if I dont clear quick enough, I will pass out from and/or die from.

So yeah, generally not the best thing to experince.

None of the above can be fixed only managed. And so the best way to do that is to keep on top of any infections. Then we hit the next problem. the current bacteria I have, I am now colonised with (means it is unlikely to ever leave my lungs.) It is also resistant to nearly every antibiotic. For the time being, we treat it only when it gets to the point that we cant leave it any longer. At this point, im usually struggling to breathe, spending more time coughing than not coughing and sleeping at every opertunity. There is one antibiotic that can keep the bacteria under control, but if we keep using it, the bacteria will adjust and when I need it the most, it may become resistant. Its like being between a rock and a hard place.

I do my nebs everyday without fail. I am very compliant with treatment, I know that if I miss one session then I feel it in my lungs. My current session includes Salbutamol (short acting bronchodialtor - to open the airways) ipratropium (long acting bronchodialator - prevent bronchospasms) Hypertonic saline 7% (salty soloution - makes stuff on my chest looser) Amikacin ( anti biotic - keep on top of infections) Budesoonide (steroid - to keep inflamation down) +/- Dnase (DNA acting solution to thing the stuff on my chest - mega expensive, can only get limited options due to funding) I do these between 2 - 4 times a day depending. I also do chest physio and spend a minimum of 9 hours on a heated humidifier.)

So overall my team are on top of my treatment and I am doing everything I can to stay in control myself. And yet a week after coming out of the hospital and I feel like I am back to square one. If left to my own devices I can sleep for 14 + hours straight. The more I move, the more I cough and the more exhausted I get.

Im finding the whole thing frustrating at the moment. I always thought it would be the something surgical that would finish me off, my latley, it is looking more like it will be this infection. Its soul destorying.

But anyway, onto the nice things.
I have just spent a few days in france with my parents. It was nothing major, but a few days away from everything. Time to relax and just be. prescious prescious time with my family, doing silly unintresting things like cooking a meal and generally hanging out together. It was nice and I totally fell in love with the place that we stayed. One day, I want to own a beach house there. I think the air would do my lungs good.

I forgot a piece off my humidifier. Had to kinda do a Blue Peter job, but it worked. Do I get a badge now?

I am also doing 2 night classes. One for photography and one for guitar. I am loving it. I miss playing an instrument and the guitar feels like the right one to learn with. Its sitting next to me now as I write this. I have been practising my cords, until my fingers hurt. I will get better and I cant wait.

Anyway, long enough, thank you for reading and all that jazz.

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.

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.

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.

Update

I should update this, but I am going to try to keep it short as I am pretty exhausted.

I finally got my contrast ct results when I went to London. The surgeon first looked down my airways. Cleared a load of crap out of the edges of my trachea and commented that the scar tissue was coming back, though I told him I dont want him to do anything at the moment. It has been clearing itself off and on and right now I dont feel up to surgery. He agreed with that, knowing that I know when things get too much and that I know how to get help.

I asked about the CT, he said, oh did we do one? Yeh he has that good a memory.
Turns out, from my trachea point of view, things are as we thought, just extreme narrowing where the tube sits through. The good news being that we are not wearing into any blood vessels at the minute, which was feared. So in conclusion to that, the pain I keep getting, seems to be from the scar tissue pressing on the tube. Kind like when you have shoes that rub. At first you dont notice too much, but the more you walk on it the more painful it gets. Which is what I do during the day, the movement of my neck aggravates it so it gets more painful as the day goes on. Differnce being is that shoes you can take off or put a plaster on.

So for now, it is onwards and just being sensible with my trachea.

However, the CT did show up something else. I have some odd marks on my right lung, nodules, but as they could only see a small portion of my lungs and had nothing to compare with, they are not sure what it is. So I guess that is something to go puzzle out with my chest doctor. Mum asked me if it was something to be worried about and I told her no, but in truth, I dont know.

I do however need to see my chest doc soon. I think it might be time for IVs again. The crap coming off my chest is disgusting once again and it is making me struggle and ache from coughing.

bad day

The sun has started to go today and with it so has my energy.
Last night, I slept badly. Coughing waking me up frequently, half alert, hoping for my phone to go to tell me they have a bed for me. Yup, I am still waiting for the hospital to have room to fit me in for treatment.

I knew it was going to be a bad day from the time I woke up. I guess coughing a load of blood out of your lungs at 8am, will give you that feeling. I got up and moved about for a short while, hoping to ease the pain in my muscles from coughing, but by mid morning, I had fallen asleep on the couch. Mum made dinner, I picked at it, which is unusual. And then I gave up. I couldnt stay awake, I had no energy to move, so I went back to bed, hoping that an hours rest would liven me up.

I fell asleep upright, because it was to much effort after climbing the stairs, to move my pillows. I awoke 5 hours later, feeling no better for having had the sleep. So today has been a wasted day, of sleeping and doing nothing of importance. I hate days like this, they leave me feeling old and useless. They leave me wanting to scream at the world. I am still positive, I am still happy, but I find myself day dreaming of times when things maybe easier.

I have an order of cards to make. And right now, I dont have the energy to put in for a good job. But, I am making myself, when I can work on them. Because being active helps, And its nice to sit at my desk and play with pretty paper sometimes.

I just wish that the hospital could find me a bed. The hospital I go to is a specialist hospital, they dont have an A&E, but because it is specialist the care is excellent. If I really cant stay at home and need treatment quicker than they can give me, then it means going to the big hospital in the city centre. And whilst that may help, I have never managed to recieve treatment in there without being pushed to the limit of crazy.

The big hospital is unclean, I dont trust them, to the point, that the last few times I have been in there, I keep a bag with bleach spray and wipes in, to clean my room and bathroom everytime I use them. I always come out with more bugs than I go in with and the staff are generally lazy. My IV will break and it will take 2 days before they get someone to fix it, where as the specialist hospital its done within an hour or so.

It sounds like I am complaining, believe me I am not, I know I am lucky to have so much choice in health care, but right now, I just cant face the added stress of the other hospital, so I shall wait it out for my good hospital. I just hope that it is sooner rather than later, as the waiting is getting harder.

Bad day

Today has been a horrible day and its not even 6 pm yet.

The doc came to re site my line about 3am. After 3 failed attempts, she gave up and said she would get a doctor to do it today.

I feel like crap today. I woke about 10:30, got washed and changed, meds and nebs and by 11:30 I was fast asleep. They woke me for dinner, but I didnt eat it as I couldnt wake enough and was to tired.

They woke me about 4, as a member of another team was going to put my line in as I was missing my meds. He was lovely and instead of just putting the line in, he looked at all my notes and such. After a very long examination, he declared that he can feel a fair amount of fluid on the bottom of my lungs. He wanted the respiratory team to review tonight.

He eventually got a line in, on the back of my wrist.

But chances are it will have blown by my night time meds.

The respiratory team have reviewed me and decided to carry on as is and that my lungs are ok, this was after a 2 min check.

I can barley stay awake. My head is pounding. After having no dinner, I barley ate my tea. It was cold by the time I plucked up the energy to consume it.

I feel worse today than I did when I came in.

Here is to better days tomorrow.

Goodish news.

hmm so spell check tells me goodish is a word, who knew ha.

So this morning was finally my follow up to chest clinic.
After running a heap of tests, my lungs do show some inflammation, but nothing that would give me the degree of discomfit that I have.
However, my cultures, for the past couple of years, have shown an unusal bug. Its normally a stomach bug/germ but it is in my lungs. They ran tests to try and find out why or how it has gotten into my lungs, but they all came back clear. So it is a mystery, but could have occured during any of my procedures.

So basically for the last couple of years, I have had a continous infection, which is why I have been feeling so crap all the time. When I get an infection on top of that, that is when I feel dreadful.

So the good news is, with treatment this will hopefully clear up, giving me more energy and curing my breathlessness. The down side is, they want to treat with with some super powered antibiotics for at least 10 days, which need to be given IV. So they are arranging a bed for me, and I will be admitted for 10 days before being reviewed to see where we are up to.

But yay I might be able to breathe by the end of it. How good would that be.
He called it sterilizing my lungs.
And once that is done, hopefully there wont be to muchdamage and it wont come back.
so yay.

still going

ah I havnt managed to get on here much this week.
Things are ok, but it has been a long week.

The antiobiotics the docs put me on, did exactly as we thought and increased my anti rejection levels. Many phone calls,more bloods and a few appointments later, I had to stop my meds for a couple of days and then rebegin them. Things have settled now, but I am still coughing a lot. We dont want to have to keep guessing with meds, so more cultures have been sent for and the results should hopefully show more.

My mood has not been in the best place this week and I do fear that things are begining to slip, but we shall see on that one.

Exhaustion is my main problem. And a couple of nights, I have woke up really gasping for breathe. My issues, as usual is that I dont want to worry anyone.I dont want to make a fuss. What if it turns out to be nothing and just me over reacting. I wish there was some test I could do at home that would instantly tell me either your fine, or you need treatment.

Going to try moving more tomorrow, so we shall see on that one.

And on that nore, im going to go sleep as I am exhausted. Though I did get some pretty pics yesterday that I still need to transfer off my camera.

Good while it lasted.

I have a strange feeling of dejavu
Its dark outside, after midnight and I am quietly creeping in through the front door.
The house is quiet is in darkness and quiet.
I lock up and put the alarm on, before creeping up the stairs and into bed.
There is something missing that is in my memories though.

Alcohol.

When I used to come in, it was from a night out partying.
I used to go up the stairs on my hands and knees to prevent falling over or because my feet were sore from dancing.
Tonight, it was out of exhaustion.

I have just gotten back from A&E.
Mum has had a bad recation to the chemo again and thrown a temperature.
I took her in at 4 this afternoon and have just gotten home.
Although all her results look clear, as she is feeling rough and has a temp, they want to keep her in over night.
She has just had a cry on my shoulder. I wish so much Icould take this pain away from her.
To perhaps deal with it instead for her.

You know, I always thought that I has a low pain tolerance.
Sure there has been the self inflicted shit, but her, that differnce.
But medical stuff has just kinda been accepted.
I bearly notice them putting canulas in these days and flushing them when they tissue, is just something that goes with them.
But, watching my mum in tears with it, every time the drip is moved.
I wish so much I could take this away from her.

But then, I guess you know its going to be a bad day, when you wake up and can bearly move one side of your face.
This morning, I was virtually stuck to the pillow (I know so attractive)
Upon a prod and a poke and making it to the mirror, I discovered that I somewhat resembled a hamster.

So, off to the on call docs it was for me. 

They think its a sinus/tooth infection.

So much for me being proud of making 5 weeks without antibiotics.

Hello Amoxicillin. 

Lets just hope it clears up quick.

Its starting to bug me as it goes right up to my eye and when I blink, it rubs on my glasses.

Not to mention, that I cant put any weight on it.

Which is awkward for sleeping and means its painful to wear my humdifier.

So yeh, my plan of spending the day running treatments, has gone out the window.

Tomorrow will be a better day.

Thoracic surgeons in the morning.

Its a close by clinic and I do like my surgeon.

Just keep swimming

Today is a bad day. It is one of those where I feel like I fight for every breathe. The heat isnt helping.

Yesterday, I had promised to spend time with mum and take her out, which meant getting up in the morning. We had a good day. Went to a shop with a garden centre type thing and craft centre, so we were able to split up and both get something out of it. We then had a picnic in the car overlooking a lake.

We were watching a swan with 9 babies. That must be hard work.

I got a lovley bed spread, that I am dying to put in my room, but I wont until I get to tidy it properly.

Last night, after tea, I sat on my bed with my laptop as I normally do. Now normally, I browse around and catch up with people till about 1 am ish. But not last night. At 7, I found myself falling asleep. I meant to sort out my tablets and run my neb an such, but literally had no energy. I must have fallen asleep as my dad came up for a shower at about 9ish and shouted to ask if i needed the bathroom. I literally crawled to the bathroom, tipped my meds down my throat, turned on my humidifier and collapsed back to sleep, not fully waking till way after 11:30 this morning.

I was literally dead to the world.
Unfortunly, I still feel exhausted and my lungs are shouting at me for sitting still too long, Every breathe is makes my lungs burn and I know I am avoiding using the bottom half. My shoulders ache and ribs sting.

I am doing all I can Lots of nebs, antibiotics, lots of fluids. I have spent the last hour on my bed, nebs on full, humdifier on, fan on. It is exhausting. I want to stay in this position for the rest of the week. Not have to move. But alas, there are things to be done. And I have to be social tonight. So instead, I shall take the painkillers and hope that they wont sedate me to much. And hope that the antibiotics kick in soon.

And that, they can hurry up and change my diagnosis from suspected, to confirmed. Not that I want to have any type of lung issues confirmed, but perhaps, once they are, we can begin a treatment plan. Get rid of infection every other week and stupid breathing crap. I am booked in for a high contrast CT next week, so perhaps that may help things.

Maybe I should just quit complaining at this point. I mean, I moaned last week that I had a mans deep voice, but this week it is little more than a squeak and very hard work to get out.

And apart from that, I just need the ability to explain things to mum. That yes, there are things that need doing, but just like when she is on her bad week and is unable to do them, I to am at that point and unable to do half of what I need to. Its so frustrating. gah.

When things work correctly

When things work correctly, they are much easier to deal with.

The whole mutual trust bond is begining to build on this ward now, I like it, it makes things much much easier.
I had it on my old ward and I swear it saved my life a few times.

Basically, my body sucks, and I can get pretty sick pretty quick, without showing any of the normal clinical signs. Such as going into respiratory arrest when my oxygen levels were still displaying at 100%.

Well, after the long addmission at my local hospital, they began to trust me and would listen when I said something was not right.

Now, I seem to have good relationships with the staff here. They know that my situation is complicated, but they have been more and more friendly the longer that I stay here. Most of the nurses when walking past my door either wave or shout in to me, same when I on the corridor. If they hear me having a coughing fit, they stick there head in to make sure there is nothing that I need. Often they hide in my room so they can have a gossip and such. It just makes a lot of difference. They also dont mind when I have people in past visiting or make the ward smell of take out he he.

But, the whole team have worked smoothly on this admission. Ok they often dont know what the plan is for me, but that is mainly due to me being complicated. But, for example, when I first got out of theatre, the pain team came to see me daily to make sure I was pain free and were able to change the meds, which doctors are often scared to do due to my liver and such.

There was also the dietician, the physio, chest team, plebotmists, doctors and other various people who have visited everyday to minimise complications. This has not been the easiest of tasks either, as I had a lot of reactions to the pain meds at first and even had to have an urgent nero exam doing. Which was amusing as I almost fell over twice walking in a straight line and the doctors face was hysterical haha.

so yeah, anyway.
Well yesterday, I told the docs that I had suspicions that my chest was brewing something. They sent of samples to the lab and told me to keep on top of nebs and physio, which I was anyway. This morning I felt worse and told them I was about 80% sure there was defo something there that shouldnt be. After listening to my chest and it being clear and I had no temperature, I was expecting to be told the same, just keep up with the nebs. But nope, instead they said, well you know your body better than us and your due in theatre Tuesday, so lets start you on antibiotics.

It was wonderful not to have to explain myself, or wait around while getting sicker. And I have continued to do everything I can to keep my chest clear. Using about 15 nebs a day gah. But now, I have my humdifier back, which has been wonderful.

So fingers crossed it is going to clear.
But I am doubtful. Despite my best efforts, there has been no lay off in the crap I am producing. Normally I get bad in the morning and evening but am ok during the day. Not today though. Whats more, the stuff that I am coughing, really stinks. (gross I know) At first I was the only one who could smell it, but others can now too. Which is disgusting and makes me feel so damn dirty. Unless I do some rapid healing tonight, its not going to be clear for Tuesday. I wonder how far this trust will go and if they would put me on IVs tomorrow in an attempt to clear things.

oh well, fingers crossed. And although I have been given day leave the last few days, I have decided that tomorrow, I need to stay in. My body needs all the energy it can get to fight this right now.

I would say here is to better days, but it has been pretty good days so far already.

Progress and completion

I could have done without that week in hospital!!
Where has the time gone, Christmas is so close now.

Things have been strange. My last admission, was hard. I struggled the whole way through. I am not sure if it was because I went in nearly the exact same time as I went into hospital last year, but I ended up staying for 3 months last year. Perhaps it just made me reaslise just how vulnerable I am right now.

I have said for the last few months, that I have this odd feeling that I need to make the most out of this Christmas, and that is what I intend doing. I want to make lots of happy memories this year and I want to give the people who mean the most to me special presents, that mean things.

When I was in hospital, at one point, I felt so rough, was in so much pain and so many of my blood tests were out of range that it felt like my body was giving up on me. All I could think of was please not yet. I hadnt had my Christmas. Years ago, when I was stabbed, I made a deal that I just wanted one more Christmas well I got that and then I got greedy. But I am not going to be greedy now, just let me finish everything and have a good year.

Now, I am still recovering, still have a persistent cough and feeling run down. But I am determined that I am not going to let that stop me! There are things that need doing. For example, I had promised to clean my mums carpet, something that has been put off for too long due to me being unwell. So Sunday we got the machine and cleaned right through. Anyone in the UK, who is thinking of cleaning their carpet I really do recommend the rug doctor. Its so much easier than the other home machines and wow it makes such a huge difference. Anyway, that was Sunday and Monday and believe me I ached afterwards.

Monday I also had thoracic clinic with my surgeon. He actually zoomed the xray in properly for me on the screen so I could see. Its amazing looking at my trachea, you can see the narrowing so clearly. I would guess, looking it at, that I am currently on about 50% of my normal. More so than that, I am at 4 weeks now since my last dilation and laser, this is the longest I have gone since my resection! And yes, I do still feel breathless, but I have not hit the point where I struggle to do basic things due to it. This means one of two things. Either I am getting used to the breathlessness or the scar formation has finally slowed down.

I guess the next thing will be to find out where my normal is. From the start, I had hoped that I would end in having a normal airway and be able to breathe the same as anyone else my age. That is probably not going happen and I need to adjust to that. But, right now, I dont have a trach in! I am out of hospital and I am able to potter around. Sure I cant run marathons or even a flight of stairs, but I can walk on flat ground and almost hold a conversation whilst doing it. As I have not had surgery, my voice is the strongest it has been in over a year. It still breaks and I cant adjust the volume of my voice, but I can get my voice across and I even had a phone conversation with my doctor today. So looking good!! (dare I say that?!)

In other news, I have actully finished some of my projects I had on the go! I wanted to photograph them, but my web cam is playing up (boo!) But my sisters scrapbook is 100% done as of tonight. My nephews canvas is finished! and I have made a special christmas card for my neighbor. Oh and I stitched a sock monkey and completed a small cross stitch of a tortoise for my mum. (Must be the first one I have completed in about 3 years)

Yesterday, I also started the project I wanted to do for my mum for christmas. Its turned out great so far and I have completed the main snowman part. Now I just need to try and find a large piece of felt to use a backing, but I am working on that.

Things are going well! I have motivation, I have completed some projects and next week I am taking my niece to London for her 18th! I cant wait. It will be very christmasy in London and its just going to be fun. I am debating on getting my tattoo on the anniversary of my transplant! IfI can afford it I may get it. eek.

Things are going well! This is usually the time of year when I go off on one and lose everything! But I am determined this year that it will not happen. That is one of the reasons why I am keeping busy, but it seems to be working so far.

Contrast

Friday, I woke up and really did not feel well, but I had not been feeling well all week. I decided, I was going to be stuborn. I had made plans with a friend to go out and spend a nice day with her. It was a nice day, but it was hard work. After 10 minutes of walking, I began to feel like I was going to collapse. I was standing in a shop with her and at one point, I had to literally throw the stuff I had hold into her hands and get outside. I felt so shaky and hot, I thought I was either going to pass out or throw up.

I thought perhaps my sugars had gone funny for some reason, so I bought a coke to perk them up and some carbs to keep them up. The problem was getting them inside me, while feeling like I was going to vomit. After a bit of persuasion, and sitting near to a loo just incase, I managed to get them and after a little while of sitting still began to feel a bit better.

Went for dinner with my friend, mainly so I could sit and such. The exhaustion that came over me was so extreme. I drove her home, where I literally curled up on her sofa for an hour before I managed the drive home again. Got to ours, and virtually left my car in the middle of the road, the effort of parking it was just to much.

I had Alison coming in the evening so I would normally help my mum with tea and such, but I sat on the sofa and could not physically bring myself to move. I just curled up for an hour, shivering and feeling totally rotten. Alison came in and knew right away I wasnt well, I didnt even get up to answer the door to her, and I was bought up to be a good host. She sat next to me, telling me off for not canceling if I wasnt well. Of course, I kept on that I was fine and to stop moaning. I put on my hoddy jumper as I was cold, so I had a long sleeve top on, a knitted jumper and a big thick hoody and I was still shivering, while everyone else was complaining of being hot.

Alison made me check my temperature, which had risen to 38.1, then decided that she was calling the out of hours doctor to see me. It was kinda annoying but funny, the fact that she is my friend who comes to visit me for tea and instead ends up giving my full medical history, address, date of birth and doctor details via the phone. From now one perhaps I should refer to her as my second mum haha.

Anyway, the doctor wanted to see me, so I managed to shuffle out and Alison bungled me up in her car with the heaters on. Doc took my temp and it has risen again to 38.6, so he said I had an infection, but now to figure out what infection. Did all the usual stuff, water samples to rule out bladder and kidney infections and listened to my chest to rule out a chest infection. He said he thought my chest was clear, but could not be sure without an xray as my noisy breathing might very well mask and infection sounds.

He then gave me 2 choices. He said, idealy, he would like it if I went to hospital so that I could have some further tests and find out exactly where the infection is and the best way to treat it, I of course made a face. So he said, he could write me out some antibiotics and I could give them a go, but that, should I get worse, or show no improvement I had to go straight to A&E. Of course I went for the second option.

Once again with Alison playing mum, telling me to stay in the car while she went the chemist and generally looking after me and finally home, where I curled up and didnt move for another hour. With much reluctance I took some of my layers off and snuggled up in bed with my teddy feeling sorry for myself. When  heard my mum and dad coming to bed I even shouted my dad in to give my bear a goodnight kiss haha. Think he thought I had gone mad.

I slept ok, but kept waking up in pain and needing to move. Even now I am still in pain. Every part of me feels painful. My joints, my muscles and my skin. It hurts to even touch my arm, which gets awkward when it comes to sleeping. But the antibioitcs seem to be working and I feel a hell of a lot better than last night.

I honestly thought I would end up in hospital by this morning I felt so rubbish last night. All I could think of last night was please dont send me to the Royal, I couldnt be dealing with more poking and prodding. Lets hope I continue to improve. And I have a thoracic appointment Monday morning anyway, so if it hasnt perhaps my surgeon there can organize some cultures or something rather than dealing with admittance's.

I have y next London admission and surgical date, which is a week Monday, Looks like they are keeping on top of it after all and seeing me every 2 weeks. So I need to be fully recovered by then, else they surgery will just take too much out of me again.

Its really strange when the role of a friend and a career blur. You dont expect in your 2's to go and 'hang out' with a friend and instead end up looking after them. Such contrast, but she certainly is a keeper.

Missing!! and a new layout.

It has now been a number of hours, probably 72, if I worked it out, so this can now offically be reported as missing.

At approxamitly 20:40 on 27 July 2010, my Itouch, went missing from my home. I am greatly concerned about this matter and I hope that said Itouch will return to me very soon as I am lost without it.

haha.
Nah seriously, my itouch has like vanished off the face of the earth! I had it the other night as I had it on when I went for a shower. I vaguely remember picking it up with my stuff in the bathroom but I dont recall what I did then. I know when I got into bed about 2 hours late, I could not find it on my bed, where it is normally kept. I assumed I had left it in the bathroom but it was too late at night to go hunting in there so I managed without it. I have since searched my room, my laundry bin, my regular bin, my bed, under my bed and all through the bathroom, but there is no sign.

I live with my ipod though =[ I have my film subtitles on it, important addresses, books, games, music. I dont sleep well without it as I use it to block the stupid ringing in my ears out. I use it for medical textbooks and such when I am doing my voluntary work thing. And I use it for sneakily looking up answers to tv quiz programs to make myself look smarter than my dad lol.

No doubt it will turn up some place stupid like the fridge (which I have already checked) but still annoying. I need it!!

And if you have gotten this far, I am pretty sure you will have noticed my new look. (hopefully)
What do you think? It still needs a little tweaking as it takes a while to load, but I think I like, just hope its easy enough to read. I do love Venice. And this photo was taken when I was so so tired, it was worth it, just wish it had taken easier and been sharper. The camera kept trying to tell me I was in the wrong and that it was daylight not 10pm.

I am also having one of those minor frustration things going on in my head right about now too. I had a GP apointment today and I was going to pick up a script. When I got there they told me that the doctor had refused to write my script as  i needed bloods doing first. When I explained that it was anti rejection drugs and I cant do without, they offered to write me a couple of days worth until they got blood results. I just dont get why GPs need to check this?! I get bloods done a minimum of every 3 months in a hospital clinic so it is monitored. And if the results came back wrong, the GP would still need to give me the meds but refer me to Liver clinic. So why not just write the script out to begin with? I said all this to the doctor, but she was still, yeah, we are still not writing the script out till we get your results.

So after pushing my luck saying all that to her, I couldnt push much more when it came to the purpose of the appointment. I explained about the whole infection thing and how the anti biotics were not long enough or strong enough to deal with it. It still has staphylococcus in it by the way. She agreed that if it was still heavily infected when I got to London they would just refuse to take me to surgery. That being said, I was hoping for a nice 10 day course of 500 mg tablets to kick this infections butt. Instead, I came out with a whole 7 days of 250 mgs. Which I know is not going to clear it.

She also started debating on what dressings we could change to help it, so I told her my plan to switch to duo derm and metaline that evening for a couple of days to allow the skin to heal. She looked kinda taken aback that I knew what dressings were best and how to take care of it.

Its weird, I feel bad most of the time talking to the doctors as I feel like I am telling them what to do, when they spent years at med school and 'know better' but often, I know what I am talking about, I have more personal experience and I know what works and what dosnt. Of course, I never want to come accross as cocky or a know it all.  But this is my health and if I dont get what I need right now, things can get pretty bad pretty quick.

I did mention about a mole that has been painful so I have cream for that and of course, with being high risk for skin cancer (thank you anti rejection meds) I have to go for a check up again next week and possibly a referral if it hasnt settled.

By this point I didnt mention the extreme tirdeness or headaches, I knew she would just say, well just wait till you go to London and see how things are. I do however, have my suspcions that it s caused by to much carbon dioxide. They come on pretty bad when I talk or when I am walking, painkillers hardly touch them and now I have nausea adding to it. But its wrong to self diagnose so Im going to shut up at this point.

9 days till I am in London and I should be able to breathe again! yay!

oh please let me know if there are any issues with this layout? not clear enough, or not displaying and such.
Thankies.

exhaustion continues

YAY

I reached 2000 views!!

Thank you everyone for your support and kind words.

Ah so I failed my challenge of making an informative post everyday. oops.
I may try and do one a week for the next couple of weeks instead to still get them.

Im claiming it wasnt my fault lol.

After the last post I made, I just literally felt like my body was giving up on letting me do things. Just walking from one room to the next was exhausting. I would say, I felt worse than when I was recovering from my transplant.

So the doctors rang on Friday, my dad answered and of course they wouldnt tell him anything due to patient confidentiality. (And yes they are aware that I cant hear and they are aware that I have no voice, so what is the point in phoning. ) So mum rang back, they said the same, they eventually put her through to someone more senior, who still said no, so my mum just went, 'I know what your going to tell me. That her swab results are back and she needs to come pick up a prescription.' To which they stutted a bit and then eventually said, yes. she explained about how I think its on my chest too, so they said they would leave me some forms to send some samples and that if things got worse or I was having problems, to just ring or drop in and the doctor will fit me in right away.

So on the plus sign I got some shinny new tablets, that are bright blue in color (They look very pretty when I mix them with my bright yellows)

On the downside, I doubt these meds are going to do anything at all! They are only the lower strength and only a 5 day course. Considering this is the 3rd set of antibiotics for the same wound, I just cant see it clearing. (And I would rather not have a serious infection when it comes to treking to london as I dont want surgery to be delayed)

Oh yeh, not sure if I posted, but I have been given a date for going back to london for surgery (dun dun dunnnnnn) 8th August. eeps, I still get that stomach dropping feeling everytime I think about it but, im trying not to think about it, which means also not looking at trains and hotels and such which isnt very good really.

Ive been trying to still get out and about and im starting to feel slightly better so perhaps the meds are helping a little. However, mum keeps suggesting that I use the wheelchair again. She sees how exhausted I am (which is kinda odd as she used to really push me to keep moving) The heat isnt helping either as I get a lot more breathless with the heat. She also wants to take the wheelchair to London as I dont know how well I am going to recover from this surgery and how comfortable my ribs will be, or how many of them they will attack. Ha have to learn to travel light as I wont be able to throw my big back pack on or drag a heavy case.

Oh yes and that is yellow nail polish I have on. (I love it, mum thinks the pattern is pretty, but the yellow is horrible. Therefore it is staying!)

urgh

I dont think that I am going to be able to make a factual style post tonight :/
Which kinda sucks as I was enjoying making them.

I hate to moan about how I am feeling all the time, but, it does seem to be filling so much of my life at the moment and defining what I do.

I have been feeling under the weather for a couple of days but I was doing the whole, if I ignore it, it will go away style thing.

I have been feeling cold and tired mainly. I know there is some type of infection in my trach site, again! I told the nurse this at my tube change on Monday, she said it looks fine, but I know that it isnt. I have gone from needing to change the dressing every sort of 30 hours to now needing it every 10 hours. It dosnt look to bad because I changed dressings and started to use the wonderful duo derm on it. That stuff is like a second skin and does wonders, but I cant use it for more than a couple of days as I get really itchy and rashy and ick. So anyway, I insisted she swabbed it for me and sent it off. No doubt I will get a phone call with the results in the next couple of days. (I think cultrues are about 5 days, so sometime next week)

Anyway, I now think, whatever was/is in my trach site has gone onto my chest. Coughing fits seem to have increased a lot and it looks nasty. Plus I always know when my chest is blocking up, when I need to double the amount of tubes I go through. I had gotten down to one for a night and two for a day. Now however its 2-3 of a night and 6 of a day. Charming huh.

But tonight, I just feel so drained. I was so tired last night, I was asleep by 2, which is fairly early for me. My alarm went off at 11:50 and I couldnt wake up. After hitting sleep a couple of times I eventually woke at 12:20. Could barley keep my eyes open all day. It got to tea time and I just sat with my plate staring at it. I felt to tired to physically move my arm. I had a few mouthfuls, but then nausea kicked in. I kept trying for a bit more as I often feel sick when I dont eat, but each bite made me feel worse, so I gave up and curled up for an hour.

Perhaps its the painkillers. I started with real bad lady pains last night, that I dont normally get. But then, perhaps my body is just objecting to things at the moment. My voice feels like its getting quieter and I know I am really having to struggle and force it out at the moment. Which of course results in headaches from the pressure and lack of oxygen.

Perhaps im just in a moany mood.

But tonight, I think I might put a film on and get into bed.
Sorry for suck an icky post.

Liver Transplant Information & National Transplant week

So I promised to write a couple of factual, experience type of entries. (fun huh)
If you have any questions, even if you only see this like years after I have written it, then please get in touch - comment as I will still answer.

As today marks the start of national transplant week in the UK, I am going to start with Liver transplant.

Did you know that you are more likely to need an organ than you are to donate one?

Did you know that all major religions support organ donation as it is seen as a gift, not destroying any creation?

Did you know that a lot of people wont sign the register because they feel that if they were ill, they would not get the same treatment? This is completely untrue, as it would be different doctors dealing with it and the doctor treating you will always do their best to help you.

Did you know that in the UK alone, 3 people will die on the register everyday?

Only 28% of people in the UK are on the register and we have rank nearly the lowest out of all developed countries.

Show you care. Sign the register!




OK so my expiernce with transplant is slightly different from most peoples. My transplant was due to trauma (stabbing) rather than illness. This of course comes with its own good and bad points. I didnt have to go through the awful task of living life on the list, always waiting for the call, life on hold all the while getting sicker and sicker. But this also means that I did not get the chance to accept needing a transplant, in fact I didnt even know I had had one until about a month after it and the consequences didnt sink in for a long time after that. It also meant that I did not experience that suddenly getting better feeling that most people with transplants experience, instead, I remember being well one day and the next thing I knew I was ill and told I would never fully recover. From never seeng a doctor, never taking any tablets, never being sick, to suddenly attending a lot of differnt clinics, taking a handful of pills a couple of times a day and generally being exhausted everyday.

But I am coming to terms with it and I am still here, which has to be a god sign right.

I think out of all organs, the liver is the one people know least about. Heart and lungs everyone knows what they do and that you cant live without them. Most people know about kidneys and dialysis due to huge media coverage (It is the most common organ transplanted and generally the one with the best out come)

But, my parents for example, didnt even know what the liver did nor that it was that important. I think awareness has increased recently with all the media on alcoholism and such as well a bloody George Best (who caused the rates of organ donation, especially livers, to fall dramatically) So that is where I think I should start.

The liver is the largest organ (except for some places that tell you it is skin that is the largest) in the human body. It is located on your right hand side of the body, under your lungs. The main job of the liver is to aid the break down of food and pass it into the blood system. It helps to change the food into energy that the rest of the body can use.

The liver is the most complex organ and actually has 1500 separate functions, this is why, even with todays technology, it has been impossible to create an artificial liver. Liver disease/failure often shows as Jaundice, which is a yellowing of the skin and the whites of the eyes, due to a build up of chemicals (bilrium) in the blood. This may also be accompanied by things such as abnormal clotting or internal bleeding. Liver failure can also lead to low blood sugar volumes, that on their own can cause problems such as brian damage if not managed correctly. As Liver disease progresses t can cause damage to the other organs as they are under more strain.

Ok, so I am going to skip straight to after transplant now. Please remember that I am using my guide book and things that I have picked up since transplant. Things may have changed since I learnt or may vary in your area, so please check with your doctor if you are unsure on anything.

After transplant, life changes, hopefully for the better, but their is a lot to take in. My biggest suggestion, always keep a pen and paper close by. Jot down everything to look back on. and never ever be scared to ask questions!! There is no such thing as a stupid question.

You will learn a lot whilst in hospital, some of which im not going to really cover as I dont feel I remember enough of it, nor would it be useful to know before transplant or once discharged. This will include things such as physio showing you how to use a rolled up towel to support your abdomen so that you can cough with less pain. Get plenty of rest after transplant to heal quicker, but also get up and moving as soon as you can. The longer you sit, the harder it is to get going due to muscles breaking down. You may also have a lot of tubes to adjust to at first. You might have a T tube coming out of your abdomen that is used to drain fluids such as bile.  It might have become nescary to have a feeding tube placed in your nose to give you extra nutrition whilst you recover. And probably the worst one to adjust to is a catheter, which will drain your bladder of urine until you are up and about and able to deal with toilet needs better.

And of course you will have at least one line in somewhere. This will probably start off as a central line in your neck. This is to give you fluids and medication such as painkillers.

The first three months after transplant are pretty tough, but hang in their, it will get better. Set backs are most often experienced in the first couple of months. This is because you need high levels of immunosuppression to begin with to stop the transplanted organ rejecting. You should avoid any sick people, or people with colds as best you can for the rest of your life, but most strictly in the first couple of months.

I would say, go out and buy a couple of big bottles of hand gel and place them all around your house, especially the kitchen. Makes sure everyone uses them regular and keep a small one in your bag and in your car. Public toilets are some of the worst places. I often look around and if they look nasty but I have to use them, I will gel my hands before I even come out the stall.

Medication
Your whole medication regime will have changed after transplant.At first you will have a lot of painkillers and of course some laxatives to counter act the problems caused by the painkillers. I was always told to use natural senna only.

You will also have immunosuppressants, sometimes called anti rejection medication. The body views the transplanted organ as a foreign object that should not be there and so it attacks it. Up to 3 types of anti rejection medication can be prescribed long term at the same time. They basically stop your immune system from working as effectively, which as I am sure you will gather, leads you a lot more open to infection. They also have some larger consequences as in they leave you more prone to developing certain types of cancers, especially skin cancers and ovarian cancer. Sun cream should be worn in daylight and you should avoid sun during the hours of 12 and 3. Regularly checking your skin for changes as well as making sure you attend any appointments such as smears can help to reduce your risk.

The main anti rejection medications are:
* Cyclosporin (Neoral)
*Tacrolimus (Prograf, FK506)
*Azathioprine (Imuran)
*Mycophenolate (Cellcept)

The amount you take of these drugs will often be changed after blood tests, especially in the early years. As time goes on you will be checked less and the dose changed less. I currently take Tacrolimus twice a day and Azathioprine once a day.

These medications all have their own side effects and effect everyone differently, however the most prominent side effect is tremor. You may have trouble doing tasks such as writing when your levels are altering a lot. The medications can also effect things such as mood and sleep, giving vivid dreams. By taking these medications, their is also a high risk of developing diabetes, but this will be tested for at clinics. It is a good idea to get a bone scan every 2-3 years too as the medications can cause weak bones (Osteoporosis)

You may require other drugs such as sedatives and anti depressants as you adjust to living with a transplanted organ. Anti biotics maybe required to begin with to help aid the body and they may also be used whenever you have an infection. Anti ulcer drugs will also be given due to stress and changing levels of acid in the stomach. Some people develop problems with their blood pressure whilst in hospital and so medication maybe needed to treat this also.

After transplant, should you ever take ill and see a 'on call' doctor or a doctor who you are not familiar with, make sure you tell them you have had a transplant. It is also a good idea to ring your transplant liaison to check that it is ok to take any medication that has been prescribed to you.

Infection

Generally speaking, you will get sicker, quicker than an average person. What can cause a cold that clears up in a couple of days in one person, can often cause a major infection such as pneumonia that takes a couple of weeks to get over in you. Therefore it is a good idea to keep yourself well and away from sick people where possible. It is also a good idea to be able to spot if you should start with an infection.

Personally, I know I am getting ill when I begin sleeping a lot more than normal and my temperature begins to play up. I feel cold even when everyone else is normal. If you get a temperature, be seen as soon as possible as the sooner you catch it the easier it is to deal with.

Dietary requirements 

Healthy eating is essential after transplant, but there are a few precautions that you will need to take. Fruit and veg are great and you can still eat them! However, wash them all before you eat them. This goes for all pre packed salad and fruit as well.

You should never consume unpasturised milk or 'live' yoghurt. At the moment in the UK, there is a big thing with bringing out bio yoghurt. Every company seems to be going to bio, which is annoying when your not allowed it. The same with those little drinks such as actimel. They all contain live bacteria, which is ok for a healthy person, but with immunosuppressants they can cause infections and liver damage. The same goes for french of swiss soft cheese (camembert, brie), blue veined cheese (stilton) or any cheese with mould.

The one I struggle with is meat. I do love my meat. However you need to make sure it is fully cooked. If you ever travel to France, state 'Bien encoute' as they like to eat meat while its virtually still alive. (This was a major problem for me when I was in hospital their as they kept bringing me meat that was still bleeding, which is a big no no) I would suggest investing in a meat thermometer and a fridge thermometer to make sure your meat s kept at the right temperature. Cooked meat should only be kept for a maximum of 2 days and never ever reheated. It is also not recommended to buy things such as pre cooked chicken, especially in the likes of supermarkets where it is in a hot counter. This is because keeping the meat warm, can bread a lot of bacteria into it which can be dangerous.

Anything with raw eggs in it can be bad for you. This includes mayonnaise, egg nog and very lightly cooked eggs. Duck eggs and marzipan are also best avoided.

Drinks can be akward to remember which you can have and which you cant. In the UK they recommend not using bottled water. Tap water is far better for you and contains less bacteria. However if you travel abroad then they recommend switching to bottled water (But use a well known company such as vital, rather than the cheaper companies who just bottle tap water) or water purification. All other drinks especially fizzy drinks are fine to drank, however you should avoid ICE, again it can contain bacteria and such.

Eating out

Eating out is ok to do, though a little nerving to begin with. Check with the waiter to make sure there is nothing in the food that you are not allowed to have such as mayonnaise. Buffet style meals  are not a good idea (Though I do get naughty around this area, but I am a long time post transplant and on a very low medication level) Ask for food to be well cooked. And if you use fast food such as McDonalds, you can request that they cook your meat fresh. Only freshly cooked rice should be eaten and you should never drink out of a can! The metal on the lid breeds all kinds of bugs. Instead, wipe the top then either use a straw or tip into a glass.

Holidays

Holidays are a great idea! Ideally, I would wait a year before going on holiday to far away from home. I cant stress how important holiday insurance is! (I am still paying the bills from my 4 day trip to France without insurance) At first after transplant, I went with the only company that did travel insurance for medical problems, now however there are a lot of companies about that do it. Be warned though, you will pay more for it than an average person and even more if you have experienced any rejection. I have gone years without liver problems, so at this stage, I phone the company I am going to go with. They allow me to get full insurance on everything except my liver for the same price as a regular person would pay for insurance. This is risky, because if anything happened to my liver, I would have to pay for treatment myself. However the way I look at it is that I always have bloods run before I go on holiday so I know my liver is working fine. It is unlikely to suddenly take a turn for the worst during a two week holiday and if I feel myself getting sick, then I can usually get home pretty quick. (I used to use Atlas for this purpose, but I use a different company now as I need cover for my other medical problems)

Make sure you take enough medication and a few extra as spare, I usually take an extra weeks worth. This is just incase you should get stranded for any reason. It is also good practice to split your medication into at least two bags incase any should get lost. (I also pack about 4 days worth in hand luggage just to be safe)

Be careful with vaccinations too as live vaccines are not allowed after a transplant.

Pets

This is one of the hardest areas to think about as I love animals. The main restriction (And I looked this one up in my handbook) are caged birds as they can cause lung disease. Cats and dogs are fine as long as they have all their vaccines and worm medications. Animals should be kept out of the kitchen were possible and litter trays and such should be cleaned using gloves and throughly washing hands afterwards. I wanted ferrets but was told this was not a good idea, however, I now have 2 tortoises, but I am very cautious with these. Someone else cleans them out and I wash my hands after every handling. (Though I like to kiss and cuddle them, which, I keep getting told off for hehe)

Socializing
It is a good idea to avoid crowds for the first three months after transplant again due to infection, but once your three months are up there should be no problem. However if you come into contact with anyone with things such as chicken pox then you need to contact your transplant unit right away.

Clinic
If you have a morning clinic, you should not take your morning medication until you have been and had your bloods tested. To begin with your bloods will be checked frequently (maybe 2-3 times a week) this will gradually become less until you find yourself only being checked every 6-12 months. (Currently, I see my transplant hospital every 6 months and my local hospital every 6 months in between, so my bloods are checked every 3 months. This probably would be less, but given my history they like to keep an eye on me as I am on a lot of different medications from different areas)

Useful things to have

Ok, so this is a quick list of my most useful items once I got home after my transplant.

First off comes alco gel.

Buy it, keep it, use it!! 

Tablet box

Medications can get confusing. More so they can get confusing when you find yourself feeling exhausted and want to go to bed, but remember you need to take your pills. I sort mine out once a week and that means whenever I am due tablets, I can just take them without thinking about it. (I have strip ones that have one holder for each day of the week. I have one for my morning meds and one for my night meds. If I have day meds, I tend to just carry an extra strip with me.)

Thermometers

I would say buy 2 of these. Buy an in ear one.

These give the quickest readings, often record the last couple of readings and are more hygienic. However, before buying, look to see if they have probe covers and if they do can you buy them to replace the ones you have used. (I spent a lot on my first one only to find I couldnt buy covers for them) For people in the UK lloyds pharmacy do a calpol one pretty cheap and it has a big display.

I would also say, buy a stick one.

These are smaller and cheaper so you can throw it in your bag if you are feeling under the weather. They can be used under the arm in the mouth or in the bum (though I wouldn't recommend the bum method) I prefer these to the in the ear ones. They take a bit longer to give you a result, but I use them in my mouth and I find they are a lot more accurate. The in ear one can give slightly different results depending how far you push it in. Anything over 37.5 you should take a couple of paracetamol and speak to your transplant unit.

Brita filter

These can purify your water for you easily without having to measure out salts and such. They come in a lot of shapes and sizes and they are one essential item that I wont go on holiday without.

P20

This is one item I would recomened over and over again and I would be lost without it! (They also now make it in P10)

It is a suncream (well more like an oil) that has a protection of 20, though I think it has much more as I have never burnt with it even when I was burning easily. It is so hardwearing. You put it on in the morning and after 15 minutes, nothing will get it to budge. You can go on sand, swimming, sweating, make up, wet wipes, no matter what you do, it will stay on adequately for 12 hours. And whats more, it still lets you get a bit of color.

http://www.p20.co.uk/about-p20-and-p10/

I recomened this to anyone with children, scars or who burn easily. You just dont have to worry about protection during the day. When I went away in May of this year, I found that my current anti biotics had made my skin really sensitive again. I sat in the sun for about 15 minutes in the afternoon and managed to burn all my abdominal scars through my t-shirt. From then on I put this on and had no other problems with them.

Bits and Bobs

The only other things I would recommend is having a well stocked medicine cabinet. Keep a first aid box with sterile dressings and anti bioitc cream for any cuts or scrapes you may get. Paracetamol (acetaminophen) for pain relief and temperatures. Senna and dio calm for any funny tummys. Perhaps a sports drink incase any illness should occur as they can help balance missing salts such as potassium.