honesty

Time for some honesty.
Honestly, I am struggling.
I am struggling more at the moment than I have done in a very long time.
And its starting to take its toll.

Im not in any emergency situation, things are no worse than they have been in the past, but the adjustment is hard.

I know that air quality can make a big difference, but I think that I somehow doubted just how much of a difference it can make.

While I was away, my breathing wasnt fabulous, but I was able to breathe. I was able to be active in the afternoon and then find the energy to walk down to the beach in the evening for an hour. I was able to shower and dry without stopping. I was able to climb the flight of steps without stopping. I was able to wake in the morning.

I have only been home a few days and I feel heavy and dragged down. Showering once again has to come in stages. Stairs are done as a little as possible and with a rest in the middle. And sleep, was not this continous thing that I could not get away from.

I got home monday. By Wednesday, I had my cough back. I curled up in the chair and slept right through mums chemo sessions, I never do that. Thursday, I slept till 10, then after a struggle to get up, went for bloods. And slept in the waiting room. Came home, had dinner and slept till tea. Today, I only woke 2 hours ago and I already feel ready for bed once again. My lungs feel heavy and painful. I feel weighted down by them. My stridor has hit the pitch I can hear and I am once again coughing a ton of crap.

Its been almost 6 weeks since I have had any antibiotics, which is almost a record for me over the last 2 or so years. Perhaps its time for more.

I am exhausted, mentally and physically. I know it was like this before, but this time, my body is not used to it. It hasnt been a slow decline, its sudden. My mind is fighting it. My body succumbing to it. I hate it. I want to be active. I want to run, to dance and even to talk.

I think that is one of things hurting most again. Talking has become to hard again. I can barley project my voice. The strain of getting sound out. Most things that need to be said, are now once again said in whisper, but more so I find myself just not talking.

Its hard. And all I can do at this point is wait. It will be a slow decline for the next 2 weeks. And then, I need to plead. Im sure you all know my hatred of trachs, but right now, I am considering asking to have mine put back in.

Its hard.

still going

oh wow a day time post :)

Right now, I have that horrible feeling in my muscles of exhaustion. My brain feels a little groggy, like it wants to sleep some more, but for now, I think its time is had some awake time.

So from that you can gather that I am still breathing! yay.
And its great.
Ok, thats a lie, I think.
Its not great in the sense that its not like average joes breathing, for example walking and talking at the same time is still a problem, but it is great in the fact that it is better than when I had the trach in. I can even get though most of the day before the headaches crash in. And to have all that, with no tube hassel, well its pretty amazing to be honest.

Then obviously the million dollar question comes into play. Does that mean the last surgery worked/helped? Its a difficult one. I find it so hard to judge what is good and what is bad. Like i say my breathing is wonderful, but that is only compared to the crap I was used to when I was 70% blocked. It is better than just before I went for my last big op, but then, when I had the big one before it in August, things were even better to begin with. I was breathing great then, peak flows up in like 350, which is only classed as mildly obstructed.

Before the last big one, they were down to 200 after laser and 120 before. And now? Well, they vary between 200 and 250.  I dont even know if peak flow shows anything. I know that in asthmatic terms, anything below 250 for my height/weight/age would be classed as critical and would earn me a bed in A&E. But I know that my system has adjusted a lot to it.

I also know, that right now, my chest brewing something. Its always disheartening to catch a glimpse of fluorescent goo and knowing your body just produced that. What is more, I only finished a course of antibiotics yesterday. Least it is confined to my chest. And is a million times easier to handle than if I were trach'ed.

So all good news. As for the exhaustion, it seems a little unrelenting at the minute, but then I did push myself a little too much yesterday. Helped mum with the shopping then visited my sister. My niece got a rabbit for her birthday and it is just the cutest thing in the world. Lays in your arms like a baby so you can scratch its tummy.  We bought a lead for it, as their garden is very open, so we were hoping it could go out to play, but not be able to leave the garden. To put it simply, rabbits dont like leads ha.

I didnt even come online last night, instead, went straight to bed when I got home. Now that is odd for me. oh wells, nothing planned for today, thank heavens. And mum is naping on the couch. All is well in the world, until next week of course, when we begin again with the whole chemo round thing. fun fun fun. which is actually another point, which may even help thinking now. Monday, I have clinic with my thoracic surgeon, but Wednesday, I finally have my refferal with the chest dude. By Dude, I mean top consultanty person. So perhaps that may finally move things along, and help to get these annoying chest bugs to settle down and stop jumping about in my poor lungies.

Emergency calls and almost disasters

Anyone who knows me, knows that I am not a morning person. I dont normally see the day before at least 11am. So, when I awoke this morning shortly before 7am, I knew something was not right.

Last night, I went to sleep as normal with my humidifier on and such. When I awoke this morning, something didnt feel right. Now my breathing often changes through the night, when the tubes need changing and such, so at first I just thought, it was something like that, until I reached my hand up my trach and discovered it was not there.

I must have had a bad night last night and fidget around so much that I pulled on the trach. I was meant to change the tube holder and such, but was to tired so, so left it for the next day. Instead, it had come lose.

I have had it well and truly drilled into me, that if the trach comes out, the first thing I should do, is try to put it back in, as long as the tube isnt completly mucky, as clean ones can be sorted once the airway is secured. Well, I did that, but, there was no chance of it going in, the hole was well and truly closed, thanks to my lovely  rapidly healing body.

Then came the  uh oh what now. So far, I had run on what was drilled in to me. I sat still for a few minutes, checking that I was managing air flow and it seemed ok. Grabbed my sats meter and checked them, again they were fine. Next came what to to do now. There was no way I could get the tube in, so if it needed to go back, it was going to mean theatre. That left me 3 options. London, A&E or my wonderful surgeon up here.

I got up and, after dancing on the squeaky floorboards, to try and slowly wake my parents up, I felt like a naughty child, I didnt want to wake them on the weekend and I dreaded them going into panic. But I plucked up the courage an woke them, warning them not to panic before I explained.

They rang my old ward for advice, who said to phone 999 for an ambulance. eek, no way I thought, so we agreed that Dad would drive me to A&E, so I went and got dressed. Within 5 minutes, the phone rang, it was the ward mum had just phoned, who said, if I was still breathing ok, to come over (I live right opposite the hospital, I can literally walk to my ward, quicker than an ambulance can get to our house.) It was close to hand over time and one of the ward sisters who knew me had heard my name and so rang my surgeon at home (bless him of a weekend) and he said to come in and be seen by his team.

And that is how I ended up with a surgical admission at 8am this morning.

They tried to reinsert the trach, but as I had found, it was closed. They were unsure what to do as they didnt want to damage any of the new areas. They booked theatre time and a team as a precaution and once my surgeon made it to the hospital (after several phone calls all morning) he reviewed me. His initial view was that he would like to send me back to London via ambulance, so he went to phone London and get their advice.

He rang them and within a few minutes, my big surgeon from London rang my Liverpool surgeon back from his mobile.

They are now in contact with each other and I am being monitored. Technically, I have been admitted to my hospital here, I have a bed that no one can touch and the ward staff and emergency staff have all been briefed on how to handle things.

However, as I live so close and I am sensible, I am free to come and go as I please. Basically put, I am going to be at home, unless there is an emergency, until ward rounds on Monday when we will review things.

So far, my trachea is holding itself. I can breathe fine, not brilliant, but probably about the same, maybe a little better than when I had the trach in. The hope is that I remain like that for the next month at least and I get to remain trach free (YAY)

If things start to get harder then I go the ward and get the trach back. But fingers crossed, that isnt going to happen.

So an exciting day was had by all. ha
That makes 4 different hospitals, I have been at in 3 weeks ha.

But, fingers crossed, at ward rounds (Yes I have to be up mega early for ward rounds haha) I will be discharged and trach free ha. Maybe not how I was expecting to be detrached, but there we go.

I was going to stay at my sisters house last night, bloody good job I didnt hehe.

Its late

Its amazing how fragile life is.
In 25 years, I have not realized just how delicate our make up is, how easy it is to break beyond repair. And how little it really means in the grand scheme of things.

I am sitting up tonight to write this, and I know, I should be in bed instead, I know I will regret not getting the sleep in the morning, but right now, I still need my outlet.

I have not long gotten back from my local hospital, but as a visitor. Its a strange experience.

Monday, didnt go as well as I hoped. I still have the trach in and its still just as small. I am still unable to cap and talking it tiring. They lasered the new scared area again as it had pretty much closed in the week I was home. The scar tissue is re growing above the trach and so it is unsafe to take the trach out. They are hoping that it will slow down and eventually stop, but they have been hoping that for over a year now. There is a lot of unspoken things at the moment, but I think what they are saying, is that the trach is in place for the foreseeable future, either that or a stent again,but given my scaring issues stents are not great.

If it were just the trach, that would be one thing, but its the issues that go with it. The team and I have been trying to stay a step ahead this time. I have bactroban and a couple of other creams to treat the wound infections that I seem to habour on hand and I have been using them off and on. I have increased the nebulisers I do and have been trying my hardest not to complain at sitting on the neb for hours at a time. I still have my hypertonic nebs, which are a god send, but right now, I cant use them. I am too raw. I mean, usually, I get to 3 days post laser and I have no pain, yet I am still in agony this time. My throat has just had too much of a battering.

Physio increased my carbocystiene to 3 times a day, which is helping, but gradually wearing off and I was put on a tablet to help stop me from getting dizzy, due to the oxygen changes I am now experiencing. But it is still far from ideal. My head pounds of a morning and if I do to much. Pain I can deal with, but this brings tears to my eyes.

But for another month I am set. I have just set up my deliveries of trach stuff again and tomorrow, will inform the nurses, as protocol requires. I have informed my GP, though they are usless anyway. Just say, well you know what you doing, so just let us know what you need. Its like talking to a wall, sympathy only goes so far.  And when talking about the headaches from the lack of oxygen an the neck pain from coughing, its met with oh yeh, you should rest more till it goes away. Yeah because that is possible. It makes me made, because I sleep my life away and yet still feel exhausted.

Which brings me to life this week. My mum has taken ill. When I got back on the train, my mood was stooped out, I was tetchy even for me and I dreaded facing my mum as I knew I was going to fall apart as soon as I saw her. Turned out the other way though. As soon as she saw me, she started crying. Turns out she had been feeling unwell, but didnt want to cause a fuss. So a couple of hours after getting off the train from London, I was driving my mum to A&E. It took every once of strength I had to stay strong for her. To give her medical info correctly, to remember diagnosis from before I was born, to tell them her drug list, allergies, treatment plan. She just wasnt in a position to remember it herself.

She was admitted in the end and I left the hospital about 2am to go home and sleep. I hadnt slept the night before due to a med mix up an pain so the sleep was needed.

Since then, I have been trying to keep on top of things. I need to keep her positive. She needs to see that this isnt a problem and can be managed, else next time she will put it off again. I have been sorting out appointments and shopping, phone calls and washing. Making sure she has everything she needs, like she does for me. Making sure my dad get food an sleep. He does not deal well with these type of things and would probably just shut down an sleep in the chair, eating chips permanently.

To say it frustrates me, is an understatement.Im 25 an should be able to deal with this kind of thing. But instead, it is taking me forever to get on top of what needs to be done. Using large amounts of caffeine to be able to make it through to the end of the night. But I will admit, that finding the time to fit in the things I should be doing, is becoming increasingly difficult. Dressings, medication and nebulizers are being left till last minute and perhaps not done as well as should be.

Things will settle, one day.

But then, going into my mums ward and seeing them all set up with their chemo, no hair and in so much pain, is a heartening experince. Sometimes, we go on, not for the hope of a better life, but to make the lives of those who need us better. Running away would be easy.

I think that is what I am seeing most right now. The extra reserves that come into play at hard times.

I hope I can repay my mum even a small amount of the care she has given me. But I also hope with every bone in my body, that my mum never reaches the point that some of those people on he ward are in.

This week has taught me a lot. It has taught me, that it is ok to ask for help. It has given me a lesson in patience and that no matter how much I think I know my body, there is always room for surprise.

The journey home from London completely and utterly wiped me out. I knew there would be reprcussions from the feelings I had in the train station, yet they still shocked me when they came around. I literally couldnt move for the first couple of days home. Walking from one room to the next was a challenge and focusing on conversation was just too much. I slept through the night and would go for a nap in the afternoon. But with each nap, I would need to be woke about 4 hours later with some force for I was in such a deep sleep.

I was going to an appointment the next morning with my mum and reaslied I wouldnt have time or energy for a shower before I went, so I decided to wash my hair in the sink under the tap. (Yus this is something I do semi frequently, usually to avoid getting red splodges up the wall or when I have a trach and fear  showers) By the time my hair was rinsed, I sat on my bed with a towel wrapped around it and just didnt know what to do. I had a list of things that I needed to do. Change my dressings, take my meds, run some nebs, set up humdifier and dry my hair. Just the thought of moving made me want to cry as I just did not have the ablity.

Luckymum came to check on me on the way to bed and saw me biting my lip trying not to get annoyed. She helped me set things up and dried my hair and such. But that just felt like such a huge step back. After trasnplant, I fought so hard to get back to the place of being able to be independant that I swore I would never get into that postion again, I swore lots of things, but that and never using a wheelchair again where my two big ones. I went back on the wheelchair one last year but needing help just to get by,or just to run treatments, was a big one.

Since, things have improved a little and I am now able to keep on top of my own care once again. However, I am still taking 4 hour naps in the afternoon and generally finding things difficult. Right now, I have a size 6 trach tube in, this means I am breathing through a 5mm gap, so even smaller than just before I went in last.

Today I could have done with being rested and having that little extra energy, as it was Mums first Chemo session. It went ok, took forever sitting waiting, then about an hour for the drugs to go through. She has felt okish so far, but has gone to bed feeling sick. I imagine tomorrow is going to be much harder. But we will take that one day at a time. Though I did give her a big lecture the other day, about how she should go into it positive and none of this crap about how awful its going to be and how she wont be here next year. I said, you have had good luck, your 60odd and got to that point with relatively good health. To spend the next 18 months getting to a point of wellness again, in a lifetime really is nothing. She started going on about how she was old and cant deal with things being old. I said, well I would rather have goten sick when I was old and had my life to live, but grass is always greener huh. I think that got through.

I dont know. I know she has a lot to go through, but I also know my mum and know she works better on a tough love approach. I do love her and care for her, but right night, tea and sympathy will not help her. And this is where I am a little pissed at our GP. She has known my Mum for years and yet is really mollycoddeling her. You know, heres some sleeping tablets to take and dont go out shopping or do this or that. I still believe that if she had dealt with things orginally, rather than burrying them under sleeping pills, then the sleeping pills would have a much better effect now that she needs them.

I have a lot of ill feelings towards my GP at the moment, which is turning into an issue. For reasons I wont go into, right now, I can not bear the thought of seeing her,but I am getting to a point where I really could do with seeing a doctor. I just, cant right now.

Last night, I didnt sleep, not because I wasnt tired, but because I was in agony. Its another viscous circle. Because I am breathing through such a small gap, I struggle to keep my chest clear and cough the crap off it. In order to clear it, I have to cough with so much force. The force of coughing has strained all the muscles in my neck, meaning  right now when I cough, I am almost in tears and lying down, is agony. But if I dont cough,  I block up and need to cough even more fiercely.

I am taking the strongest painkillers that I have here, but its not touching it anymore.

Last night, I  fell asleep about 6am, with no humdifier on, because i couldnt stand the added pain of anything touching me, only to wake up again at about 8. I woke up disorintated. At first I thought I had been to theatre or something because all I could focus on was pain.A more urgent thought then kicked in that I couldnt breathe and so I quickly changed my tube. When I took the old one out, It was virtually compltly plugged, with perhaps a a pin head sized space through the middle. It took me about 20 minutes before I could focus enough to take more painkillers and about 90 more minutes for them to kick in enough for me to sit.

When my breathing goes crap, my oxygen levels stay fairly ok most the time, its the C02 that builds up and this had obviously happened for a while before I woke. The headache eventually settled about 3pm. I still dont know why my body decided not to wake me to tell me.

I am getting used to not being able to breathe, but the pain is making me grouchy. I cant find a comfortable way to sit, its just there, constant.

Incapable

So, the full story.

The orginal plan, was that I would go to theatre on Tuesday, have the trach capped on Wednesday, have it taken out on Thursday and go home on Friday. I did manage to get home on Friday, However, I still have the trach in.

As planned we capped it on Wednesday and things went fine during the day. However, I woke early on Thursday morning and I felt like my breathing had gone very tight. I ran a load of nebs, but they didnt do much to help. When the doctors came around on ward rounds, I explained to them how I was feeling. They decided to keep me capped and see how things went. (By capped, it means to have a cover put of the trach tube, so essentially you are breathing through your mouth like a regular person)

I did not feel right at all on Thursday. I am always sleepy, but this went beyond it. The minute I could, I got back on my bed and went out like light, not even getting washed and changed. Dinner came, I woke for maybe 10 mins and was well out of it again. I felt like crap.

The nurse was monitoring my obs, but was not really one of the more alert nurses. When my friend visited, I woke up a bit more and we decided to go on a walk around the ward. One of the other nurses noticed how loud my breathing was and she was not happy with it.

Long story short, I managed to keep the cap on, but I had some adrenaline nebs to keep my throat clear enough to breathe.

Given the issues  i had had with breathing, the doctors decided that it was best to leave the trach in for the time being. They hope whatever is causing my breathing to go so tight, is just swelling from the surgery. There was nothing more they could really do in the hospital, except wait for the sweling to go down and so they said I might as well go home and wait. Which is good in a way as my Mum starts her first round of chemo on Wednesday and I want to be here for her and to take her and such.

My two nieces were visiting and going home Friday, so I decided to go with them as they could help me with my stuff. This is where I pushed myself too much.

My breathing was being lame and I hadnt slept well, which was not a good start. Due to this, it took me about 4 hours just to pack my stuff up. By the time we left the hospital, I was violently shaking with the effort it was taking to move around, with my stuff. Not to mention that it actully decided to be really hot in London, instead of its usually cool self.

We jumped the tube as we had to get to the other side of London and this is where disaster struck. I was still feeling weak and shaky. I was pulling my case and humidifier whilst trying to keep both nieces in sight and direct them the right way, with very little voice. And out of nowhere, a huge flight of stairs. No lift, just stairs.  At one point, I got half way, stopped to catch my breathe and felt like I was about to faint. My head was pounding, my muscles crying out for oxygen. A wave of exhaustion swept over me and I just thought, I cant go any further. I waited a minute or two and eventually managed the rest of the stairs.

Then the train got stuck for about 10 minutes, which seemed to take forever and I was struggling to stay standing. by the time we got off the tube and stepped into the train station, our train had just pulled out of the station.

The two kids were just staring at me, kinda saying what do we do now? I felt like I couldnt even manage another step forward. I just wanted to give up. To drop everything, to sit on the floor and burst out into tears. I didnt have the energy, physically or mentally, to go with any plans, to sort anything out or even move. I was just to drained to do anything.

I never want to feel like that again. I never want to be that incapable. That stuck.


I eventually managed to get things together and spoke to the train office explaining. They were nice enough, and probably scared by this rambling twitching creature clinging to a huge carrying bag with hospital pharmacy written all over it. They then let me know the platform number, so that we could get down there before it was displayed to the public, allowing me to board the train and actually get a seat.

But last night, I was in so much pain from the exhaustion, that I could not sleep, so most of today has been spent catching up on that.

And the trach? I coughed all through last night, coughing up a fair amount of new blood.But today seems a little easier. I have struggled through the day, but as the cool of the evening has settled in, I have re capped myself and managed ok with it.

So here is to hoping that the next few days continue to improve. Now just to decide if i should sleep capped or uncapped.

last night in my own bed

so, I should be packed and in bed and all ready.
Has it happened?


Nah.

Ended up messing about with dads printer, updating his computer, which went drastically wrong and disabled loads of programmes so I had to wind it down and update a few bits and leave the rest. As a result, at 11:45, I sorted a pile out of pjs to take with me and that is it ha. My wash bag is sorted, though, I need to get up early in the morning to shower and defuzze lol.

It really is hard work reemebering back to last summer. What things do I need, What did I cover my trach in, what dressings ended up working for me? I really have no idea on half of it, I seem to have wiped my memory clean from then.

The hospital now dont want me in till 7:30 on Tuesday morning as they know my bloods are clear as they have jsut been checked in Liver clinic. Its good because I get to spend Monday evening in London with mum and also, less time before surgery in the hospital for them to notice my cough. But, I do hate getting up so early to get in.

I need this done though, I cant wait any longer. If it hadnt of been this Tuesday, I think by the weekend, I would have had to give in and go to a local hospital. Had a bit of a scary incident today. Started coughing and wheezing very loudly. Literally couldnt stop coughing and gasping in oxygen in between. This lasted for about 15 mins non stop and I had to sit on the floor as I was too dizzy to stand. I eventually coughed enough to clear whatever was blocking my throat/chest, but tons and tons came out of my chest all at once. It was so exhausting and I really did think I was about to pass out at one point.

So, my nerves are still pretty messy.  I keep getting images of them with my throat wide open, not to mention the flashbacks associated with PTSD. But I have my stragies in place. And more so I know that I am in the best possible hands. I am so so grateful to be given this opportunity, that the surgeons have not given up on me. I really do hope it works as I want to be able to do fun things again. To go out and meet people, to jump a bus into town, for wander, to have a full and long conversation without resorting to whispering.

So yeah, this is my last post, till I get out the other side again.
Lifes to short to wait around doing nothing. Action feels good.
For everyone who is waiting on lists of treatment or getting better in general, I hope you make progress soon. You all mean a lot to me, even if I have never spoken to you. Keep fighting, second chances happen as do thirds and fourths. Dont let anyone tell you no or give up on you. Fight, till you get where you want to.
Take care

Love
Kim

Grinch effect

Yesterdays post was a little vague, I was still working my head around things I think.
But, I am still very hopeful with everything.
I have such huge huge respect for my doctors for listening to me, for being honest and for not giving up. I also have to give them such a big thank you for the research they do and the options that they come up.

Yesterday, my main surgeon, as in the top surgeon I see in London reviewed me again, after having seen me once a month for the last 3 months. Not only that, the professor, whom I originally contacted when I got my trach and who did my skin grafts for me last time, was there yesterday too. He is also the guy who is in all the news articles lately in regards to the way things are moving forward in this area. He has just gotten back from America where he was working on an airway transplant.

Anyway, they now agree with me, that things are not getting any easier, the original surgery is still blocking up all the time and is so my airway is still not wide enough for me to breathe through, no matter how hard I work on it. At this stage, everything that can be done has been tried. We have done the frequent surgical route, tried the medication route and I have kept up with treatments, nebs, humdifier and staying as well as I can, with such restricted breathing.

I think now, I am upto breathing, at best on about 40% airway. So think, maybe a milkshake/mcdonalds straw. Most people can cope with breathing through one for a short time, but add movement to it and it becomes to hard, so yeah.

So the next stage, is going to be a little bit of a step back, its going to be hard work again for all involved and the outcome is still a little unknown.

Basically, they are going to do what they did last August again. They want to open my throat from the outside,  to get a full view of my trachea. They are going to scrape away as much scar tissue as they can out and widen my trachea as much as possible again. They are then going to put a big strong stent in to hold it open as much as is possible. Because such a big stent is going to be used, I will have to have my trach put back in place.

It is going to be a big operation again, meaning a couple of days in ICU/HDU, back with catheters and tube feeds and knocked out for a few days on pain meds. There is talk of keeping me in London for about a week, then transfer me to a hospital at home for 3 weeks and back down to London for removal of the stent.

The aim, is to widen my throat as much as possible. They dont know if it will work or if it will help, but it is worth a try.

If this dosnt work, then the professor has offered to 'grow me a new bit of trachea' Now, I am not fully sure what that will entail or where I will end up with it. Its not something that I am thinking of yet, as I have to hope that each stage is going to work.

But, I have hopes, I have options and I have plan Bs.
I thought for a while, that this was how things were going to be, that I was out of options, and now, now they are listening and researching and I know, deep down, that I am in the best possible hands and the exact right time.

The hospital have gotten to know me and I them. The nurses run up the ward to hug me when they see that I am in, they sit and natter and although some of the nursing skills are questionable, I know that they all mean well.

After having the feeling of self doubt for so long, feeling like I was banging my head on a brick wall, people are listening and helping. And the gratitude I feel towards them is so overwhelming.

Perhaps its the grinch effect. After burying myself for so long away from everyone, now, I am swelling with love and my heart s growing two sizes bigger.
I have hope.

Moving on

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Rocking out

I was so exhausted last night on the train, That I propped myself up on two chairs, headphones in and ipod on full blast. I lost myself in the music and for a while everything felt normal. Do you ever get totally addicted to one song? You cant get enough of it and you have it on repeat all the time. Of course the addiction only ever lasts about 2 weeks and then you dont listen to it again for months. Well, I got totally hooked onto this song.


(everytime, I put the youtube link in, blogger eats the rest of my post, so anyway, the song is Meredith Brooks - I'm a bitch)

Well, I had the volume and the base right up, eyes closed and suddenly I was rocking out on my ipod. Yeh, total movements playing air guitar on my ipod, pretending to scream the lyrics out as loud as I could. The song came to an end and as I opened my eyes to put the song back on and noticed the guy from the table up the train a bit stifling a laugh. oops I kinda hung me head in shame for a minute and when I looked up he was just grinning at me. I didnt get overly embarrassed or avoid all eye contact, I just shrugged and smiled back. That was the end of our silent exchanged, but its moments like these that I feel I live for now. The random encounters, be it an exchange of a smile, some knida words, a note left on someones blog or a card in the post. Little things, things that make a huge huge difference. I think I went through a lot of the last few years not taking any of these things in. I hope to never overlook the little things again. 

So from the above, you can gather that I got the train home last night, meaning that I didnt get kept in. Well that is kinda a close call. I was called into one of my surgeons registeras, whom I have never met again, walked in and he had been reading my notes, checked some dates with me, when I had my open, when I got rid of my trach and my last surgery and he just looked at me and said, and now your back unable to breathe again. I was surprised that he could tell, as I said, although it has felt bad at times, I dont think that I am struggling with it as much as last time. But he said he could hear it a mile off, as did my mum when I asked her to confirm it, she said I sounded awful. Its funny what your body ignores sometimes. 

So on that note he asked my surgeon to come in and suggest the next step. Surgeon said again that he didnt need to look he could hear it. He then said, you know the drill, we need to admit you and get you to theatre in the next couple of days. He glanced at the theatre list and said it seemed pretty booked up, so I would probably need to wait for an emergency slot. I mentioned that I had also been sent for to the other London hospital for an admission for Monday. He checked and said he would rather I was seen at that hospital and that I had a theatre slot already booked there. So after some discussion, he agreed to discharge me on some strong steroids to come in for the admission on Monday. With the usual precautions, should an emergency arise, go to your local hospital and get them in contact with us and we will advise them on the best ways to get you down here. With the added bit in, that I could probably always be tubed (as in a breathing tube put down my throat) and shipped off to London if needs arose.

So yep that is the plan. Keep up with the steroids, cough medicine and regular nebs and back down to London for a 7:30 addmission Monday morning. Fun eh. Not liking the steroid bit, still being cautious after the whole cushings thing last year. But what is more, last year, I was on prednisone, which is a common steroid and it was between once a day and twice a day when things got bad. Now though, they have me on dexamethasone, which is basically 20-25 times stronger and last longer and I am to take it three times a day. gah. I know they say its only short term, but if I carry on at this rate, its like a week of steroids every 3 weeks, which I am sure can not be good. Steroids generally age your body quicker, so a lot of the things I am already at a high rish of like bone trouble, cancer and diabettes, is basically increased even more when I am on steroids. Not to mention they mess with your appetite and fuck with your sleep pattern. But I know, I know, all those are better than not breathing. 

So time to find some train tickets. So far, I have found that I can get a 5am train, which will get me to the hospital at about 8:15, though the admission letter says 7:30 and cost about £85 or I can travel on the Sunday for about £45 and maybe ask the hospital if they can have me a day early or something. I know they said I could last time because of the travel. Descsions descions. 

The surgeon is still standing by the whole this is relatively normal, though it dosnt usually happen in this short a space of time of this frequency. I of course have built up my own views on it. I am worried that too much lazer is going to kill the tissue again and make it weak, I am also concerned that I didnt really that much relief off the last laser. But then I have said from the start, that my gut instinct tells me that it hadnt worked properly.  Of course I am remaining positive about the whole thing, after all I am trach free, but those little niggles still sit in the back of my mind.

Relaxing days

Now my friggin ipod beeps to tell me I have been outbid! grrr, the auction ended 10 minutes ago, bit useless now.

I was bidding on a set of large and very pretty fairy wings hehe. Halloween is just around the corner and this year, I want to do things. Yes I know I am not a kid anymore but I dont care, I just want to do things for the experience this year, I also want to carve a pumpkin. I dont even know if I am going anywhere yet :/ I asked my sister if she was doing anything, as she did have a party once but as of yet she is undecided. So I want to prepare my costume just incase, however, I am on a budget with it so trying to either get things cheap or use stuff in my dressing up box (Yes I have a dressing up box but its small) Anyway, I already have my red hair, so I was thinking of some type of bright, mismatched creature, probably a witch, a fairy or a devil. I have a set of black and a set of red devil horns. You can get wings cheap here at the moment, but they are small and crappy, probably because they are on the kids department but even ebaying isnt offering me cheap ones, except the pair I just missed out on by 25 p grr.

The other things I have, which I am pretty much basing my costume on is a pair of socks. A friend bought them for me last year and they are american little miss mismatch, however I cant find a pic and they are in the wash. Anyway, they are 3 odd socks, all in a bright lime green and pink. One is stripey one has spots and one has stars and they are knee length, kinda like football socks. So I am going to wear them and probably some arm warmers. I also have a wonderful bright multicolored neck scarf thing, but I have no idea what to do with the rest. Any ideas?

I might have some tule that I could fashion into a skirt, but depending on hospitals, I probably wont get chance to do it.

Anyway, I have had a relaxing few days. I have a couple of projects now on the go and I feel better for having done it. This year, I want to aim to making a personal present for most people for christmas, though I havee not yet planned who is getting what hehe. But I have started and almost finished my sisters. I am making her a scrapbook. I cant post too much as I dont know who is reading, but I will give you a preview of one page.

You cant really see the colours on the silly webcam pic, but you get the idea. I am aiming for 20 pages and so far I have done about 15, so yay.

I have also begun on my nephews present. I am doing him a canvas for his wall. I have done the majority of the sketching now, so the rest is pretty easy. Its the first time I have worked on canvas, but I like doing it this way as I can kinda, just curl up in the living room watching TV with my mum whilst working on it, it keeps my hands busy. Again I will show you a work in progress as I know he wont get to see this :)

Its going to have all his favorite things on once its finished. I am pleased with it so far so yay. I was going to add colour, but in the end decided to keep it to black, as I have no idea what his room is going to be like and so on.

Its been nice to be busy and doing things, without being exhausted. Using my hands I can do without getting breathless, movement brings on headaches and general tiredness from having to breathe so hard. Again, mum is being understanding (and once again I am watching what I write as mum knows about this blog now and some of the stuff I write, though I am yet to find the leak that keeps getting to her) But I think she struggles to understand it sometimes.

For example, she seems to think that if I can sit and do things with paper and pens and such then I should be able to help with things around the house. Once again she said about how much time she spends looking after me and going to appointments and to London and I dont help her catch up with house work when back home. But with craft things, I can spread out on my bed and not move, but things like tidying the kitchen, involves bending, stretching, walking and carrying. I know I need to keep as normal as possible, but some times, especially if I have been out, it just becomes to hard.

Today was especially hard and I almost ended up at the GPs again. I awoke feeling full of cold, my throat was scratchy and my glands swollen. I have kept up my fluids and regular painkillers and it eased off, though it feels to be coming back again now. I really hope I dont come down with something. My immune system is not up to fighting right now, it has been blasted with steroids and a couple of courses of antibiotics in the last month alone in addition to my usual immunosuppression.

I guess at these times I want to say that Tracheal Stenosis is a bitch!! I have no idea what is going to happen one week to the next and then I hear others with it who are struggling too. There is one person I keep in touch with, for example, who has it. He dosnt live far from me, but today he got discharged from hospital after being in a month. He got his trach out and things were going well, but then his airway started playing up and now he has his trach back in, but with more problems than he had a month ago. He has been referred to my surgeon in London. I feel real bad for him, he is so down and I just wish there was more I could do than send emails to him. He is so down and has already had enough to deal with.

Tracheal Stenosis is a bitch! (Just incase I have never said it before)

Normal

I have had an amazing weekend.
Nope, I didnt do anything huge, life changing or even that exciting. What I did was, be almost normal. I had a day that someone my age might have, I did things that I used to do. I paid for it afterwards, but I had the fond memories to go on with.

Thursday I picked my niece up. I wanted to steal my sisters photos, and I managed to do all that without her noticing me. Which is pretty good as not long ago, I could have coughed and panted to much to do anything in secrecy or even to have the energy to do it.

Friday, I scanned a lot of the photos and got them printed. I also did some shopping and had a movie night with Alison and my niece. Saturday I got up early. And it was early, it was like 7:30am!! And I took Alison to her Ice skating lesson. My niece and I both got on the Ice afterwards. I didnt do much last time I went skating as I just didnt have the puff to do it. I had to stop every half a lap to get my breath back. This time, I could get round at least 2 laps before needing to stop. I didnt do to much as my blades need sharpening and the rink was crowded, but I was pleased with what I did do.

I had a wander around the shops and took Alison home. Had a bit of an argument at home, which wasnt fun but oh well. Took my niece home and came home myself. Sunday the spoon theory really did come into play. Mum commented that I was breathing heavy again and I just felt so drained the entire day that I hardly moved.

Today, I still feel so drained, but I woke early for me this morning. I found myself sitting bolt upright at 10:30am gasping for breath. I ran some nebs and rested, but sat more upright. I checked my peak flows and they had suddenly dropped to 140. I was thinking oh no, not already. But after some nebs and moving about today, I seem to be breathing a little better. So I have everything crossed that I had either drained myself too much on Saturday or that I had slept with my mouth open and dried my throat out.

Remember a while ago, my surgeon here had applied for funding for me to get a humidifier to help ease the issues I was having with my trach? Well, I got response from the funding place on Friday. It only took 4 months!! Anyway, they have granted me the funding. I didnt know what to do at this point, as I dont have the trach anymore so I didnt know if I was still eligible. Then came the issue of, would it help now? and if it didnt, would that not be a waste of money if I still got it. I put it on my list of things to get sorted when I get a chance.

Today, the respiratory nurse phoned. She had the letter confirming the funding and wanted to clarify a few things. She said she had discussed it with my surgeon, who knows I dont have the trach, but given my current issues, the surgeon still thinks that I should get this equipment. That it might help with the issues I am now having. For example, if I ran it through the night, I shouldnt wake up needing to urgently neb all the time. His original hopes were that, if I had this equipment and slept with it on, it might help my breathing so much that I wouldnt need to neb during the day at all, and so I could get on with things easier. So apparently the medical engineers at the hospital are currently in discussion and meetings with the company that supplies them to discuss which one will be the best for me and how to get it and such. Its strange how much work goes into getting one piece of equipment.

I have the solicitors tomorrow, which I am dreading. Getting through that, especially without crying, will be a challenge. I did however, have to calculate all my hospital associated stuff. In the last 13 months, I have had 72 separate appointments, spent 142 days as an inpatient in hospital and been to theatre 16 times. No wonder this year seems to have vanished with nothing to show for it.

But, through all that, I am inspired. Greatly so. I stumbled across the blog of a lady who is currently on the heart transplant list due to cardiomyopathy (Which is generally when the muscles of the heart become weak) She had an internal defibrillator planted in her chest, which went off during her speech on her wedding night. Since then she has detoriated and now has, what is effectively an artificial heart, while she waits for transplant. She has to carry part this around, in a backpack style bag. Yesterday, she posted about what she has been up to. Andrea has been going to the GYM and participating in Yoga and pole dancing classes. WOW. I mean just wow. I cant even bring myself to go the gym with a working heart, never mind carrying equipment and whilst on the transplant list. Kudos to her!! I really hope she gets her call and soon. Her blog is here if you wish to read http://stayingtruetomyheart.blogspot.com/ )

Can you guess where I am?

Back on 10 south *groans*
So yeah, I went to clinic, which meant leaving our house at 5am, so I was essentially getting up when I would usually go to bed. And for some reason I can never sleep on trains, cars yes, trains no. So waited a little while in clinic and was then called through. The doctor actually came back out to look for me as I was taking so long. Sat down in his office and he asked how the breathing was, to which I took a breathe in and said not so good, straight off he said I think we need to admit you. He asked about my peak flows, wrote in huge letters in my file SOB and circled it.Had a quick look down with the nasal camera. Man, I still hate them things, but they are getting a little easier.

He said there was a lot of granulation, more than would normally be seen at this stage. Well that set the ball rolling, I was admitted, though had to wait for a bed. Cannula placed right away. Well as right away as you can get with my veins, but it was only 3 attempts so not to bad. They allowed me to leave the ward to pick up a few bits while they were waiting on my bed being free, so I was able to pick up some essentials that I hadnt taken with me, such as juice and grab some dinner.

Admitted to the ward started on IV steroids and Anti biotics. Yes I did grumble at the whole steroid thing as I dont want to go back down the route of cushings, but they said it should be ok as its only going to be a couple of days and if it needs to be longer then they will review it.

I am now also listed for tomorrows emergency theater list, oh what fun. Probably be laser and dillation, but they should know more once they have had a look.

The thing is, at the moment it seems to come and go, sometimes I can breathe fine, and other times it feels really tight. But then I feel like more of a fraud, as I went for a walk a little while ago and I was breathing better than I have all week. I know its probably related to the whole steroids thing taking effect, but it does somewhat bring back my old ever present fear, of what if I get to theatre and they look and say nothing is wrong, stop wasting our time and stop exaggerating. I guess, I need to keep in mind my peak flows, they have been going down, so I cant be making things up surely?

I guess we shall see tomorrow. I know I am in the best hands, and I have a lot of faith in my team.

Improvement!!! & scars

I have spent a small part of this week stressing. Not a lot of stressing, but it has been something that has been in the back of my mind. My breathing is great, dont get me wrong on that one, but it didnt feel as good as it felt a few days ago. I think when you have had breathing problems, you are more aware of it for a while after, always on the watch out for problems to arise. But I didnt want to stress over it and so pushed it out of my mind, though I have been watching my peak flows a couple of times a day to see how they were doing.

For my age and size, I would expect to get a peak flow of about 450 L/min. Before my breathing took a turn for the worst last year, my peak flows were about 250 and once I got the trach, they dropped to about 150. This week, they have been jumping around between 200 and 250!! Now that is amazing, it means that I am back to how I was before I dropped. Major achievement and no wonder I have been breathing better for it. I just did 30 mins on my wii fit and my peak flows jumped to 300! 300 is amazing, I have not had a number so high in years.

It also means that it was just me stressing about being more breathless and the feeling was probably just an adjustment thing. When you think about it, I didnt do any stairs or steps for 4 weeks and now I do them a couple of times a day, so I guess at times I am bound to feel exhausted getting to the top.

That being said, I still feel exhausted all the time and yet again fell asleep on the couch this afternoon for a further two hours. Once I awoke, I went to sit in a neighbours house for an hour. When I got back, I said I would set the table for tea and again a wave of exhaustion just hit me like a ton of bricks. I really struggled finding the energy to get up. This is something, I hope eases soon. I have a GP appointment on Thursday so I may mention it then.

Speaking of my Wii, I put a few of my favourite Wii fit games on today and did just over 30 mins in one go. The good bit about this? First attempt at some of my favourite sections and I knocked all my old scores off the top. So although I feel unfit, my ability must be better if I am able to beat my old scores without practice. Things are looking up.

In other news, my trach has now fully closed over. The scar is still pretty ugly, but it will heal and such.
This is my trach scar on my neck now.

Ok, the image is a bit crap, but you can see the old inscsion, just on the bottom, from November and then this years along the top. The big long red bit in the middle is from the tube migratting upwards. My neck is still pretty swollen and an odd shape, but that will settle. There is also still some air escaping when I cough into the tissue, but it is a lot less than it was and hopefully it will continue to heal itself from outside in.

This is the scar from my rib cartilage

It is a lot smaller than I was expecting and it has healed so well in a short space of time. However, this is probably the most painful part of the surgery. It ached for a while and being big busted, meant that however I lay, there was a weight dragging on it. Whilst in the hospital, I lived wearing vest tops with built in support, however, since being home, I have gone back into underwired bras, with no problem at all. Lucky its in a place that dosnt rub. Hardly any pain from it now, just a little ache of a night when I first lie down.

The skin graft site is also healing well. Just a little red square at this point that fades some every day, no pain from it at all.

Speaking of pain, I have developed major tooth ache. Its absolutely agony. I think I am going to have to bite the bullet soon and go to a dentist. Surgery and inscsions and hospital stays dont bother me at all and I can face them with just a mild apprehension, however, mention dentists and I will turn into a quibbling mess in the corner. I know a lot of people have a fear of the dentist, but I dont have many fears so this one is hard for me.  Its strange as the dentist never used to bother me at. Then when I was a teenager, I got an infection in a toth and they had to take it out. It hurt so much getting it out and I could feel them pulling it. When I got home, I felt so rough I went to bed and awoke with myself and my pillow covered in blood. Probably wouldnt bother me now, but at the time it freaked me out pretty bad.

I got up the courage to go a few years back and they started talking about a root canal. Now I had no idea what it was, but I remembered them talking drills and such in Finding Nemo, so at  the point I panicked and didnt go back. Now the very same tooth is complaining. owie =[

Yesterday was a bad day, I was so tired I didnt even get dressed. So I think its time to start putting in some guidelines of my own once again to get myself back on track. The first one is that I am going to make sure I am at least washed, dressed and hair brushed every day even if I am not going out. I also think one for me to start working on is to get to bed earlier. I might do a couple of days where I force myself to bed by 1am, then move it to midnight. I may even set a lock on my computer to shut itself off at midnight.

I need to work on getting my weight down and work on my fitness, so I may try to bring in a few new goals next week.

Aching and increased taste

My body aches today. The kind of pain that I would have once associated with spending a long time working out, or perhaps after working to many 12 hour shifts in a row. But these aches are no longer associated with extreme over work, but simply small amounts of work. My body is unfit, my muscles not used to moving and stretching. I am in a way annoyed at my body and myself for not being in better condition. Mu mind constantly says, well if I had pushed harder whilst in hospital, I could have kept in better shape. But deep down, I know that is not true. I kept my muscles moving best I could, stretching them routinely every few hours and pushing myself to move as best I could. But some times, its just not possible to make your body do what you want it to.

This isnt something that I should penalize myself for, but merely strive to improve it now that I have the ability, where possible.

Yesterday, I walked at a leisurely pace around the shops for about 2 hours. I felt rough. My body fought against having a trach and a stent in, but now it is fighting at having to work in a normal way. My nose, unused to having air travel through it, now feels dry and bleeds often. I know this is just an adjustment thing, but it still gets annoying. In the same way that I can feel my sinuses getting blocked from the dryness. Making my eyes feel huge and sore, kinda like when you have had a bad cold for a few days. Running extra nebulisers to moisten everything and taking some medications to clear it, but it still left me feeling rough yesterday.

Was meant to go out with a friend, but was not up to it, so stayed at home and watched a film with her instead. Lucky she has stayed by me through all this from the start. Not ran away and instead changed her plans and bought a sense of normality to my life even at times when it has been far from normal.

We watch Vampires suck. Now I am a huge fan of the twilight films, but this one was hilarious. It took the piss out of so much out of the twilight flims, with the 'sullen family' and had us both laughing aloud many times. It was good to be able to laugh aloud, but also nice that I didnt have to change out of my baggy t shirt and jeans.

Today, I ached. My legs from walking yesterday, my shoulders from standing upright and my arms, from carrying a bag yesterday. Again, I stretched the muscles, letting some of the tension ease. Managed to pry myself out of bed around 12 and promptly fell asleep on the couch about 2 till 4:30. Exhaustion washed over me. I must try to find the balance. Balance between pushing my body and letting it rest. They said 6-8 weeks recovery for this op, well I am just past 4 and I feel the need to return to normality. a normality that I have not experienced for at least a year.

I want to be out doing, moving, learning, earning, expanding, dancing, skipping and generally having fun.
I need direction
and goals.

I dragged my wii fit back out this evening. I pushed it into my cupboard when I was getting stressed with it last time. When I hit the point that no matter how hard I tried on it, I was able to do less each day. I didnt get very far on it, as the batteries need charging. But, I did do my weight. Granted the last time I had been on it, was over 2 months ago, but today it tells me I have lost 9lb. 9lb might not seem much in that time, but it is bloody good. Considering I have just done a month in hospital. I tend to put on in hospital, Sitting on my bed most the day and not moving really does not use much up, plus I comfort eat due to lack of distraction in hospital.

Speaking of food.
Food tastes amazing!!
It would appear that I am getting my tastes back. To be honest I didnt notice them going. Once I got my trach, I wasnt allowed to eat for a while, then when I was, I was to busy concentrating on getting it down past the tube without chocking on it to notice the taste. The only tastes I did struggle with was Garlic. Garlic just seemed to sit in my mouth and not move, ending up tasting stale. But today, I have noticed everything tastes nicer, more intense.
Had chicken and sweetcorn soup ealier and it jsut had so much flavor in it.

Oh how I love being tube free!

Home!!

Yup, I am home!!
At last. (Only 4 weeks)
And completely tube free

And it has been a long day, though I have slept for much of it.

I have a fair bit that I want to write about. Like my adventure outside of hospital grounds and the 200+ mile journey home. About seeing friends and family and being able to talk about them. About realizing that I have lost a day some place that I didnt even notice and about how little I do actually remember. As well as a quick write up on my discharge advice, just for informative reasons of course and about the joy of not bringing any new extra equipment home with me.

But alas, I have just made it up the stairs and piled onto my own bed. A wave of sheer exhaustion has washed over me and I simply must sleep. I have a feeling the next couple of days are going to take a bit of adjusting to until my energy levels even out.

Oh but the joys of a lie in in the morning.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Capped

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh the joys this can bring.

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

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

A step in the right direction.

Life restarted, no longer needing to be on pause.

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

Heres for tomorrow. And continual easy breathing.