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.

Breathing is totally under rated.

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

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

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

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

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

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

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

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

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

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

Dare to Dream

I know that hope is one of the main feelings that can get you through a bad day. But if you get your hopes up only to be let down, is it safer to play each day by ear?

Yesterday I began to get excited. I went for a walk with physio and my sats stayed stable and high at 97%.  It felt great to be moving, at a decent pace and yet breathing at the same time. I also began to talk yesterday. I dont want to do it to much as I know that area of my trachea still needs to rest and heal, but it makes a huge huge difference.

I was torn, do I get excited? or do I wait and see. Inside, I know that it wont make that much difference as the T tube is still in and I have to wait till it comes out. But the hope was there. One of my favorite nurses came in for a chat before the end of her shift and we had a nice conversation. She asked me about the future and I replied that until things settle I dont feel able to plan my future. She was full of hope that this was going to work and I should begin to make plans. But I cant bear the thought of making plans and then having to cancel again like the last 2 years of uni.

I am glad I took this stand, as today, my body seems to be fighting back once again.

I have literally sat on my neb all day, yet still felt blocked at the same time. I even let the nurse use suction, which is a rare thing for me as I find it gross and dont like the idea of someone else dealing with it. But I let her, not that it got very far as things were still pretty stuck up.

Whilist my breathing today has still been good, it is nowhere near what it was yesterday and I have spent a large amount of time coughing my head off. With random nurses sticking there head around the door to make sure I was ok. I feel exhausted, even after sleeping most of the day.

So, here is to hoping that things improve once again tomorrow.

I am however begining to like this ward more now. I have gotten to know the nurses and I think they mostly trust me. Most of them are not that much older than me, if not the same age and I guess that makes conversation easier, though it dosnt stop me in my head turning it round and round doing the whole, that could have been me. But for now I am in good spirits.

Filled to the brim

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

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

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

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

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

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

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

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

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

Medical prettyness

Its funny how things change so quick.
Yesterday, I felt sad, I felt like I was in a zombie state, trying to get my mind to process this new batch of information. Distracting myself, to make sure my emotions didnt over flow into every day life. Late into the night, I knew that I had to keep going, I cant just give up, its not fiar on those around or those who have fought for me. Giving up would be the easy option. But thinking about my youngest niece, I couldnt do it to her.

But today, the realzation came to me, that the chances are, its not going to be my choice in the end. Well, it will be displayed as my choice, like the trach was. I could say no, but I can only say no so far, once you get to the point where you are just dying for one uncomplicated breath, then the choice is made, and it has to be for the option that is most likely to allow you to breathe fully.

The same is true now, I can say no, my voice is too important, dont touch my vocal cords. But in the end, its going to come down to the same choice, without them cutting them, things are going to get very difficult and not improve.

I have been expierncing a lot of pain the last few days. I would expect some of it, in my throat, but there is more, I have pain right inthe front of my chest, my bones hurt my muscles hurt, my lungs hurt.

The other day, I was talking to a friend about a recorder onthe ipod, that records if you sleep talk, so I set it last night, hoping maybe it would give me a clue to why I am so tired, perhaps I was having great debates in my sleep, or dancing around my (we can but hope) I was more surprised, to hear the amount of noise I actully make when I sleep. I can hear myself gasp, to cry out with a little pathetic cry, to squeak.

Not sure if these have uploaded right (let me know if they havnt please) (oh you may have to actully download them to get them to play :/ which sucks)
http://www.zshare.net/download/85193941201436c6/
http://www.zshare.net/download/85194056c3057120/


Its sad listening to it back, but I think what has shocked me more, is that now I am aware of it, I can hear it during the day too. I know where the pain has come from, from pulling so much on my chest muscles to gasp that breath in.

Something which is a little cooler, is that I got a copy of my last chest xray today. There was something on it that I needed to discuss with my other surgeon, so my surgeon here sent me a copy.

Usually, the right lung (on the left hand side of the image) is slightly longer than the left, but due to the surgery to repair a chunk of mine from the orginal stabbing, mine is shorter. You can also see the grey squiggly bits in the middle, where my previous chest infections have left their mark.

But this is the bit that is observed more often.

That lighter grey line down the middle, is my trachea. Where you can see the 2 upside down U shapes, is where my reconstruction is. You can see under them, it goes very narrow again, thats where the scar tissue keeps building up, but this is mostly clear on this image.

I do like medical stuff.

anyone want to buy me a time turner?

Where has time gone?
It dosnt seem that long ago that I was planning and listing for gifts to make and things that I needed to get done. Its christmas in less than a week and I still have loads to do, hence why it is nearly 3am and I am still up finishing it. I have deadlines to meet, and yet, I am struggling to just do basics.

I know my breathing was going downhill whilst in London, I had a few scary moments, packing up my stuff, when I just couldnt get enough air in and my niece had to tell me to sit, but more scary, and I guess this is something that I have not done before to notice. Ever had one of those moments that just gets to you and you laugh so much you cant stop? I had one of those, but pretty quick it got serious, I could not get the air in and I thought I would pass out. From then on, if something made me laugh, I was very careful to not give into it and instead take controlled breathes. I mean really, laughing isnt supposed to be scary!!

Because my throat has narrowed, I cant get the air out quick enough to clear the junk on my chest. This means that I have to let it build up there is more so I can force it out easier. The problem with this? If I cant get it out in one breathe, it blocks my throat. This was a joy I got to experience yesterday. Lets just say, not pleasant.

I have also noticed, that when walking, I have to breathe in harder, which means that my chest muscles hurt so damn much if I go out anywhere now. All this, to a point I can deal with. Its the things that effect me at the moment that I have no control over. The headaches from too much carbon dioxide and the struggle to actually wake up. I mentioned that my chest muscles have to work harder, well, when I am asleep, they get lazy and do the bare minimum. This means that the gas levels in my blood play up, giving me headaches and making it very difficult to wake. This morning, it took about an hour, to get from the point of opening my eyes, to actually being able to sit up.I then dozed on the couch for a long time before actually being able to do anything.

I know that I need to take it easy. Days that I do things, push myself, my breathing gets worse and its not just for that day, it stays down. Days that I take easy, my breathing tends to stay the same. But the week before Christmas who can actually take things easy? Plus Christmas is wonderful and amazing in ours and I wouldnt change it for the world, but it takes a lot of work to get it. To have 8 of us for dinner and all the trimmings, served with the special plates and silverware and too many courses to count. To have everywhere looking magical and festive, the presents wrapped and waiting, everything timed to perfection. It ouldnt be Christmas if it were any other way.

Time to get on with things.
Last week, I said that I hoped my throat would hold out till January, right now, I hope that it lasts out till after Christmas. 2 in hospital is enough!

The Royal

SoI vanished for over a week, and what a week it has been.
Last time I posted, I had started some anti biotics as I was feeling unwell. I went to bed and slept well, though did wake up early to mum shouting at me to do my nebs as I was coughing a lot. I felt even worse when I woke up so I checked my temp, and sure enough it was high again at 39.2. I was starting to worry, as the temperature was so high and I felt so rough with it. Of course, me being stuborn, was doing the whole, I have meds, I am fine and not getting any further help. So I tried to sleep it off.

By 5pm, I literally felt like I was dying. Everything ached so much, I was shivering despite having many layers on and although I felt the need to cough, I wasnt, partly due to hurting so much, but more so because my chest was backing up. I checked my temperature again, and it seemed to be going up and was at 39.8, despite having taken painkillers an hour before.

I knew at that point that I needed more meds and I really didnt want to go through the night incase my temp rose anymore. From training I remember that 37.5 is a temp, but once you get to 40, you run the risk of brain damage and seizures. So off I went to the Royal Liverpool Hospital. Now anyone who has known me for a while, knows how much I hate that hospital. To be fair, its about 3 years since I was last in there. But generally its unclean and the staff dont know what they are doing. I had no choice at this point and so off I trundled to A&E.

As soon as I stepped foot in A&E, I was moved straight to resus as my breathing was very noisy. After sometime, I saw the doctor who ran a load of tests. I had a fast pulse and high blood pressure, but my oxygen sats were remaining stable at 96%. Although they were not low, the doctor decided he wanted to check my arterial gases anyway. Ouch!! My artieries are well battered and deep, it took him a couple of tries and he hit a nerve a few time, but eventually got it. Well, all my gases were out of the normal range, meaning I was storing Carbon Dioxide. This along with the temperature was why I was in so much pain. I was started on a couple of differnt IV anti biotics a load of new nebs and some painkillers. I was moved to an assessment ward.

They expected the meds to kick in pretty fast but 24 hours later, my temperature was still jumping every 2 hours. There was also difficulty keeping an IV in as my veins were shutting down within an hour of stopping the IV. I was changed to oral anti biotics and given tons of chest physio and nebulizers every hour.

I dont deal well with small amounts of sleep so being woken constantly as well as feeling crap, began to wind me up. The nurses were busy and so when I started to feel rough, I was unable to do much. I told them my temp was going up and that I needed painkillers and a drink, all of which I kept getting told, in a minute. I curled up in agony but then began to panic. My throat was dry and felt like it was closing not to mention my muscles were begining to ache more.

In the end, I burst out crying at one of the nurses. She was a little shocked, but then told me that I didnt need oxygen as my levels were fine according to the machine. At this point, I wanted to scream that my levels where fine last time and in A&E, but that wasnt why I was on oxygen. In the end, I demanded to speak to a doctor, as I was getting scared my airway was about to shut down again.

The doctor didnt really listen and in the end turned around to me and said, well there is no mircle cure to fix your throat, you should just learn to get on with it. At this point, I truly wanted to scream. I was not looking for a miracle cure, I was looking for the correct meds, and for someone to keep an eye out and keep me breathing should my throat go on me.

Anyway, long story short, they wanted rid of me and so moved me to a respiratory high dependancy ward. This was much better, it was clean, the staff knew what they were doing and I was able to get some sleep.

It took about 5 days, for my temperature to settle down, but then my cells in my body began to play up. The CRP which shows if you have an infection, should be about 5 or below, mine was reading at just over 80. Then, my immune system took a hit too. As I began to get better, my infection fighting cells, dropped right down to almost zero. I was immediately put in isolation and everyone who came in had to be gowned and such.

I was not allowed to leave my room, until the cell count came back up to closer than normal. I had bloods drawn daily and a load of tests done to ensure that there is no underlying reason why my count dropped so low.

I still feel pretty crappy and keep getting stabbing pains in the bottom of my lung that has had surgery. But now, I just need to work on getting better again. Its amazing how much fitness I have lost on this admission. Usually, I work hard to keep moving, but feeling so rotten and being in isolation, meant that I didnt really. Simple things, like tying my hair up today, left my arms aching like mad. So thats my next thing to work on.

Not to mention that I now need to rearrange my admission to London as I missed it this week.

So that was my exciting week, spent in the hospital, again, bored out of my mind. I also missed my mums 60th brthday. I was discharged yesterday, and now I am going to enjoy curling up in my own bed and sleeping right through. No sill early morning breakfast wake up calls.

Positive

I really dont want to get my hopes up, but things are seeming a little more positive in the whole breathing situation at present. Things dont feel like they have gotten any worse. I am over a week on from surgery and not feeling restricted yet. Fingers crossed this is a turning point.

So last time I posted to say I was going to get a lot of my half done projects finished. Did I do? nope haha. Still working on it. I tried with mums flower basket, but got nowhere, so I am going to try and get some more supplies for that tomorrow. I knew that I needed to get my glue gun out to see if my idea with the material will work, so I did that today and I think it will work. I now have a couple of little padded squares of material and cardboard around my room hehe. So I now need to work on finding some scrap material or some pieces of felt. I also, started working on the cnadle holders for my sisters dinning room, but ran out of time to finish them, by the time I pulled my fingers off the glass jar a couple of time. Hot glue guns and I do not mix well!

Today, has mostly been spent helping mum out with a cake she is making for a friend in work. My body aches now from standing and leaning over painting things and such. Here is the finished result, please ignore all the crap in the background of the kitchen.

Its kind of a dual purpose cake. It is for a retirement, but once that is over with, you can lift the bath off and the letter off the front and it is a christmas cake. Under the bath the words Merry Christmas are etched in, and my mum is supplying her with a little flower holly style decoration to go on top. Mum would usually make her a christmas cake, but was doing the retirement one for a present for her. As they wont be working together anymore, she is unlikely to see her for Christmas.

And on that note, bed time, as I have plans for tomorrow so need to be up. :)