Sunday, January 02, 2011

Review - 2010

Happy New Year

And what a year it has been.
Am I where I thought I would be? not at all.
It has been a year of highs and lows, adjusting and coping. Overall, perhaps not the most fun of years, but character building as some would say.

I am going to do a round up of the year, by looking at y first post of each month for the last year.


Happy 2010

Well happy 2009!
Sorry I havnt updated or made the the usual type of happy new year, best worst of last year/ what i want from next year crap.

I have been allowed out the hospital for a few days again. Once again waiting on discharge that dosnt seem to be happening. At this rate I will still be in here for my next surgery date! urgh.

Anyway, I bought my laptop home with me, as I live on it. Got home, went to use it and it had a dead battery, ok, I will plug it in. And guess what wise oh me had done..... Left it tied to my drip stand in my room. Doh! So no laptop till i get back the hospital. So I am currently on my mums computer which is in the living room, so I wont use it much. They have however gone to bed, so im sitting chilling with a can of magners, bag of kettle chips and some good music. Though I will have to go bed soon else I will get moaned at tomorrow for 'staying up all night.'

Oh the joys of being home.
I promise I wont leave it so long between writing next time. And hopefully I will have something more interesting to write.

Hope you have all had a good New years day and such!


Finally a step in the right direction

I have butterflies in my tummy thinking about tomorrow, but I shall get to that shortly.

I am fully recovered now from my last surgery. And my voice? Well most morning I have a deep crackly horse voice and by the evening I can usually just about force a whisper out. So yeah not sure if you would call that progress or not.

So the future was not looking bright towards the whole getting on with a normal life crap. So I started researching Tracheal Transplants. Which is a really new procedure. I spoke to my surgeon at this hospital about it a while ago and he said that it will be a fair few years before it became possible for me to have it as its not a common or normal procedure as of yet.

I read this article about it 
BBC News. And out of interest contacted one of the professors who was part of the one unique tracheal transplant a couple of weeks ago. After a couple of emails with him, he mentioned that he thought I was an ideal candidate for either a transplant or a tissue engineered airway.

So the next step is to get a referral to his team so that they can evaluate me. He said that he is in the process of setting up a world class multi disciplinary team in London. I said that I would speak to my surgeon here in the morning and ask him to do the referral for me. To which he replied that it would be great and he will try to arrange an appointment as soon as he could once he gets the referral, with himself, the ENT surgeon and the Thoracic surgeon who all worked on this last transplant.

So wow, Im trying not to get my hopes up just yet as I know I am still a long way off. But this has to be a step in the right direction right?

So tomorrow morning bright and early Dad is coming in for ward rounds to help me explain (due to lack of voice) about having been in contact and such and to request this referal. Im nervous about what he will say and if he is able to refer me to an ENT surgeon when he knows im still under one here. But we shall see.

But isnt it nice to have a bit of good/positive news for a change in here.


Something a bit different from my usual moaning for tonight's entry.
I website I 'work' on is having a creative competition with the theme of Orange (mainly because Self Injury Awareness day (SIAD) is approaching - 1st March) and they needed some examples to advertise it with.

This is SIAD one;
Not sure how much I like this one. Perhaps it would have looked better on a black background hmmm
hmm, it does make it stand out a little more. oh I dont know.

I also played around with an old photo that I took. I took this picture when I was away with my sister on the island of Mull in Scotland.
And after playing around with it I came up with this:
While I am here, these are a few of my favorite photographs that I have taken. owh I miss having a decent working camera =[ (although I did see a great deal on a Nikon DSLR the other day and i so so want it)

Yup, so there my favorites that I have stored online. Most my decent photographs are still stored on my old laptop whose power wire dosnt work >.< I will one day get around to grabbing all my old files off there. Oh and incase you didnt notice, I do have a kinda thing for sunsets. Used to be a thing for waterfalls (again mostly on my old comp)


London Free Hospital

So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.

Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.

Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.

My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.

So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)

So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.

Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.

Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.

He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.

Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.

He also looked at my neck, where it has been red and sore. He said it looked like 
Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.

And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.


Every time is adventure time!

Today was a bank holiday, which meant a long weekend. (woo) Not that it makes a huge difference to me but my mum had an extra day off work and yeah.

Friday night, I didnt end up going to bed till about 2:30 am (yeah I know that isnt exactly late for me, but I do try to go earlier on a Friday as I have to get up to help mum on a Saturday morning.) But it was Eva's memorial and it was being live streamed from Canada.

It will be availble soon to watch (well you can watch it now, but its not good quality) but I felt the need to watch it live and I am so glad that I did. First off, hearing how Eva grew up, how her spirit has always shone through even when at her sickest, listening to her friends best memories of her, learning how much her family treasured her. She really did live a wonderful and full life.

But more than that, with the live stream, there was also a live chat. I was able to talk to people who went to school with Eva as well as others whose lives she had touched. It was nice. Her legacy truly will live on.

So I have decided to stop being a wimp and so I am going to upload the video I filmed at easter as a record of my voice. The quality is kinda crap as I had to turn my mic volume up full and I was only using the one installed on the computer, so you can hear all the computer workings too. Maybe at some point, I will dig out my old mic and redo it.

So yeah. I know I have a horrible accent, but that is my voice at the moment, sounds kinda like a whisper. I am fine around friends, but often if out, strangers ask why I am whispering. blah. Also, its harder to talk than normal talking as I literally have to force air out of my throat. If I talk too much (which isnt a lot really) I tend to get bad headaches, I can only assume these are from lack of oxygen or something. I tend to take painkillers for them which numbs it a bit, but sleep is the best cure =]

There has also been another change. A more visible one if you like.
I have changed hair color. I would post pictures, but I am not that happy with the pics I have at the minute and I want to put a few pics in from a while back, so maybe I will do that tomorrow.

So I have been shopping and got a few new top for my hols and I am also in the process of moving my 'entertainment system' around. I usually have my wii plugged in under my tv and my cable and dbox under my tv put not plugged in. The reason for that is that my tv is in my wardrobe type thing on the wall. The wii fits on the shelf underneath, but the cable and that just about fit, but once you put the wires in, the doors wont move past it. Well today I managed to get a long extension lead so I am in the process of moving everything to the other side of my wardrobe where there is more room. (though the wires will look a bit more messy) it should prevent me having to plug everything in all the time and I think the remotes should still work from my bed (bonus!.) I am part way through doing it, but I have had a few issues, my dbox currently wont pick up any signals, I should have checked it really, but it was working last time I used it (maybe a month ago) and its rare that all the channels go at once, so I will have to have a better look tomorrow, no doubt I have wired something in wrong. 

A dbox, by the way, is a german satellite receiver that runs on the cable (now virgin) tv system. You usually have to program it yourself, but you get more channels than you would on cable alone. (shh)
Once that is working I will need a longer scart, then to decide if I want to plug my dvd player in or just stick to running dvds through the wii. hmm. I've run out of scarts though, but maybe if I can get a long scart to phono It would be worth plugging in also. (hehe no wonder dad shouts at the electricity bill)

I might post pics once I am done.

Anyway enough rambling.


The wanderer returns

From the title, I'm sure you can all tell that I am back. =D

I had a good time, surprisingly after a rough start, but things did eventually begin to settle (as the weather got warmer oddly enough) and I am pretty much back to normal now. Still some possible infections, for which I need to run some swabs and I see my consultant Monday. So overall all good.

I was going to make a couple of updates while away. I bought internet credit as some places had wifi I could pay to use. However, after paying extortiant rates for it, the connections where really lame so I ended up using it mainly just to keep up with my emails. (South of France charged me €15 for 3 hours. Italy was €15 for 5 days. Frances didnt connect half the time and ran slower than dial up when it did. For the first 32 hours in Italy, I thought it wasnt working right as it lost connection every 4 minutes and was slow. However, I soon discovered we had a power cable running above our roof and the van was also made of metal and so would not let wifi signals through :/ After that I learned to charge my battery and go sit on the bench up the road a little.)

For the last 2 weeks, I have watched the grape vines grow.

Seen some wonderful sights.

Watch the sun gown down (countless times)

Admired the poppy fields.

Experienced True love in a holiday romance.

(Aint he handsome. And he looks like he is smiling at me. My torts have a down turned mouth but his makes him look happy. Oh and he came upto about my knee if I stood next to him, so rather a big fellow. Unfortunately my dad wouldnt let me steal him and take him home with us)

Visited St Tropez.

Where all the rich kids were showing off on Daddys boat.

Ate delicious Italian Ice cream in Simeone. (virtually every Ice cream shop, which is pretty much any road in Italy looks like this. But simone has to be the best. Its a little island style place on the edge of Lake Garda. And for a tiny town there are about 5 ice cream parlours plus resturants doing fancy sundays. The choice of flavors is immense, from the usual fruit one to Kinder, Bounty and Mars to more unusual flavors like haribo and bubblegum. A lot of shops trying to get your attention with free samples. nom nom)

Had nutella (Though not a jar this size =[ ) by the bucket load.

Realised the America isnt the only place that specialises in Fast food.

Had some quality time with my daddy.

Shared lots of Love

Eventually annoying my dad with the camera (I have some lovely close up shots of his nose)

Watched the sky change color (while discretely giving parentals alone time hehe (Yeah its still alone time, if i am a couple of feet away taking their photo)

Enjoyed opening the curtains to this every morning.

And closing the same curtains to this every night.

Spent an exhausting day in Venice.

Observed the locals (gondoliers)

And their boats (Gondolas)

Whatched Sinta Marks square transform from dry land, to having a strip of puddle down one side, to 10 minutes later only having one strip of path left.

At which point, we headed for the boat as we didnt want to have to wade through the square if it rose anymore. Oh and as I was having camera fun with the water and lights, we left late and so the gates where closed when we got back to the place we were staying. So I had to climb like a million stairs (literally) as we were on a mountainside hehe)

And then drove home, past all the snowy mountains. Its amazed me since I was very small, how that snow could exist. In the past we have taken mountain roads rather than the tunnel (They charge nearly £50 to go one way through the tunnel and the mountain roads are a lot prettier and more fun to drive. The year I passed my test it was great fun really using the gears on the car to climb narrow windy steep roads up the mountain. We often travel is shorts and t shirt as its cooler in the car (habit from pre air conditioning days). But its rare that the passes are open when we go in May. You get about 3/4 of the way up and then the road shuts as there is too much snow to drive past. We have, before today got out in shorts and had a snowball fight on the way hehe. its not cold up there, well unless you pick up the snow.)

And now I am back home with a mountain of washing and lots of photos to play with.
Though annoyingly, I have gotten home, been using my laptop the whole time I was away. Worked fine the first night I was home. Next morning put it on and its died a death. so it has to be sent off for repair (though its going to take a week before they can pick it up so I dont have much faith) that being said, updates maybe sporderic and not at my usual 3am posting time.

Oh and I am still deciding what to do with all my photos. Obviously I want to tweak some of them, but I still want to show them off. I may, use my other blog, that I have never posted on, to put my photos up, but I will update here, should I decide to do that. =]

Thanks for reading. And feel free to comment and such.


Up, Down, Round and Round

I dont know how to start this post.
My head is in a bit of a mix up at the minute.

I keep getting anxious. When I think of the surgery they have planned, my stomach jumps a couple of feet. Its like being on a roller coaster when you go over a dip and you leave your stomach at the top, thats the kind of feeling I keep getting.

I think its the prospect of pain that gets me at the moment. I dont deal well with pain (Yeah good aint it for a self harmer lol) Pain brings back to many memories and then there is the prospect of struggling to breathe that brings back yet more memories. I am always scared of making a show of myself in surgery. I dont want to go into a panic, nor do I want to have a flashback or something whilst in hospital. To a point I can manage it, but if it where to happen when I dont have strict control, such as when coming around from anesthetic, then it can quickly escalate.

I think I need more information on the procedure. The thought of them cutting back into my chest. The last chest scar was super painful and took ages to heal. It was months before I could comfortably wear a bra. I have so many fears in relation to this surgery. What if it goes wrong? I dont want to end up in an ICU down in London miles away from my family. Its my family that get me through all the emergencies.

Its going to be a fairly big op too. At a 4 hour minimum, I know I have done worse, but 4 hours is still pretty heafty, considering my last hernia, was open abdo surgery and was only just over an hour and my trach was less than 2 hour but they fitted in several lines and it was a full open neck surgery.

From what I gather, this will be open neck surgery too (dont I look forward to not being able to turn my head for a couple of weeks) As well as them taking the rib graft. Think I am going to be pretty whiney after this one.

But then my head jumps the other way. What right do I have to fear this? I am the one requesting it, I have pushed for them to try anything they can. I cant help but think of my neighbor that I mentioned a short while back. He was in hospital while I was in London. They removed half of his lung and now he is likely to face a long stretch of chemo. He hasnt requested any of that and has had no choice in not going for it.

What is even more odd is that he was on my ward in my local hospital ha. It is weird to think of him in the same room I stayed in (I had been in pretty much every room, but he was in the room I was in when I arrested) and working with the same nurses that I worked with for so long. For all I know he might even have the same surgeon.

I dont know, part of me really wants this and another part of me fears it greatly. Another part of me wants to take everyone elses pain and treatment off them so they dont have to go through it. You know, I hardly know my neighbor, never spoke to him, but if I could go for that surgery and treatment so he didnt have to I still would. I dont like seeing others suffer and just wish there was more I could do.

Do you see what I mean about my head swinging from one thing to the next and back an forth.

Mentally I am feeling better than I have in a long time. I am not cooking myself up in my room, im sitting outside and I am planning. But I dont know how long it will last. I still find myself lying in bed of a night watching the sun come up before I sleep. Its been a long time since I went to sleep in the dark. Maybe my dad is right, I have read to many fantasy books and have since turned into a vampire ha.

I life revolves around lists these days. Things I need to do, questions I need to ask, messages I need to send. Its almost like my mind dosnt do the day to day stuff anymore as its too busy going around and around all the medical stuff.

Ah, so my last attempt at making my blog look pretty failed ah. My comments refused to work. However, I have spent a while now playing with code and reminding myself just how much I hate HTML as well as bugging a friend to get him to spot the bits I had missed in the code (thank you andy =] ) So the comments are now working (I think) So please let me know if there are any more issues or it is hard to read.

Today, I have spent the majority of the day literally tipping my room upside down looking for my ipod. I HAD to find it by this evening as mum had said she was going to come help me look and the last thing I want really is mum looking around me room :/ Where was it you might ask. Was it in some obscure place that you would never think to look. Nope, it was on my bed lol. I had searched everywhere including my bed. Patted it down and such to no sign. I didnt want to strip it as I would need mum to help me remake it, but it was a last resort and she was about to come up anyway, so I stripped it. And there it was, under all the covers, in the very far bottom corner of my bed. (I sleep in a double) so now I have my baby back.

And yes, that is a Toy Story 3 background (It changes picture every 30 seconds or so) with a rainbow dock. I love my ipod. It also says 'To infinity and beyond' whenever I unlock it and theres a snake in my boot when I turn it off. I will grow up one day. (Did I ever mention that my message tone on my phone is Spider pig from the simpsons? and my ringtone is the original Pokemon theme? I dont have sound on my phone often, but its good when I am on the train and turn it on hehe.

I have a big achievement to post about this weekend!!!

I can get my hair into pigtails!! You might say, that isnt much, but it is!! My hair has been to short to go into a bobble for the past 5 years! A couple of months after I got my hearing aids, my hair annoyed me as I refused to wear it up as you could see my ears so I got it chopped short to hide them. It has stayed short ever since, getting cut ever 4-6 weeks. Now it hasnt been cut since December, except for the trims I do myself and I put some layers in the front. My hearing aids have since improved and are not as chunky as they once were, nor do I have big huge moulds, so they are not as noticeable, not that I will be wearing my hair up much, but still.

Oh and to toally relive my childhood, look what I bought yesterday.

I got into Dawsons creek when I was about 15, most people I knew had already been into it, but had stopped watching it by the time I got into it. Well I loved it and used to tape it (Yes on old VHS) to rewatch. Always said that I wanted to find myself a Pacey, he was like the silly yet sweet guy in the series and of course he was cute (Joshua Jackson) Well anyway, when I was very ill and in ICU, I refused to sleep no matter what they gave me and I started staring at the machines, which was making me more ill. They used to put the tv or radio on to try and interest me, but again, I wouldnt watch it. So mum bought a load of my Dawsons Creek videos in and I would semi watch them and the nurses knew the series so they found something to try to talk to me about and get me to socialize.

When I got out of hospital, the series had just stared to come out on DVD and so I bought each season as it came out. They were all well played as there wasnt much I could do except sit around and rest. Now, they are lined up and take pride of place on my shelf under my TV (Next to my House MD box sets) but they have not been watched in at least a year, probably more.

I saw the series finale yesterday, which I never owned on DVD so I had to get it. Perhaps the up and coming weeks will bring me rewatching the old series, I may even take the finale to London with me, though it is sad.

Oh and it was a wekend for finding stuff, I managed to locate my internet dongal too, which means I should still have internet while in London, though I dont know how much I will be upto using it. Its amazing what you find when you clear out your room, things you didnt even know you had lost. I think I must have come across at least a million of these little things.

The bane of my life. They are called Heat Moisture Exchange (Or Sweedish Nose) and basically I am meant to wear them of a night to warm and humidfie the air I breath in to stop my chest clogging. They work a little, but are not ideal for those of us with big boobs. I lovingly refer to them as my St Bernards Barrell as I feel like the St bernard dog when I wear one.

And though they do help, I often find them on the other side of my room n the morning. Either they annoy me to much during the night and I throw it, I take it off to have a good cough and forget where I put it. Hence why there were tons hidden under my bed.

Ah well, hope you all had a good weekend.


Tubes and inspiration

Right now, I feel surrounded by tubes. Kept alive pretty much by tubes.
Tubes to feed me oxygen, tubes to feed inhaled medication, tubes for fluids and IV medication, tubes to feed oral medication. Tubes tubes tubes. I think the hardest thing about tubes is that it is pretty much impossible to feel anywhere normal whilst surrounded by them. Going the toilet? Dont forget to take your drip stand stand with you. HEadache getting to much, put your oxygen back on, chest to dry, pass the nebulizers, medication time and still not able to take oral meds, put it down the stomach tube. Airway not holding open, lets stick a tube in it.
Tubes can be a god send, but at the same time a restriction. They remind you that things are not as they same, they keep you tied down.

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

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

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

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

Fingers crossed again.
I think I might be able to tomorrow. I am already getting a little more voice out.
Its strange though, its as if I can breathe in two differnt ways. The way that feels natural, but leaves me breathless, I assume through the tube. And the way that feels alkward and takes concentration but leaves me able to breathe better, I assume through my mouth. Tomorrow will tell when the easy way gets blocked.

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

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

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

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

Waiting To Exhale



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 )



I made it out for Halloween!!

I woke up and still felt rough, but no worse than I had the day before, so I rested for a while, clocks had gone back an hour so I had an extra hour to rest anyway hehe.

I started the day by sitting in the kitchen in my PJs eating a sausage sandwich and carving my Pumpkin. Mum had done sausages for breakfast but didnt want to wake me so left mine cooked in the fridge, I was able to just heat them and eat, I have this phobia thing of cooking sausages, I can never cook them right, so I avoid it at all costs. So the TV went on and I got to work on my Pumpkin. I was something I had said I wanted to do this year, as I have never ever carved one in my life. Well it came out wonderfully!!

I even added a bat in the background. Of course, me being a big kid, couldnt wait until dark to see it lit up, luckily, our downstairs bathroom dosnt have any windows in it, so I was able to balance it on top of the loo to light it up and photo it. I sent a picture to my mum, who rang me to ask where I had bought that from hehe.

So then, I began to get ready. I took it all very slow, literally, it took me about 3 hours just to get ready. My makeup didnt come out anywhere like I wanted it to and I wasnt entirely happy with my costume, but I loved my wings!! And as they say, you learn from your  mistakes for next time.

Though, I did make the mistake of getting all ready, then getting int he car and realizing that I needed petrol. Yeah, I got a fair few odd looks in the petrol station and one of the till operators had a little girl with her who was whispering to her mum to ask me if I was going out that night. It was so sweet. But I could hardly answer as my voice completely died.

This is my nieces pumpkin.

I gutted it for her, but she did all the design and carving herself.

My nephew wanted a fancy design, so we worked on his together. He wanted Sonic, so after a fair few failed attempts at drawing him, I finally managed to get one that looked ok and so we carved him out.

Later on, I was just sitting talking to my sister for a bit with a glass of wine and some music. Its ages since we had a proper chat, what with me not being able to use the phone and such so it was nice. But lately, I find that my hands need to be busy. I hate just sitting, even if its watching TV without something in my hands. So my nephews pumpkin was still sitting on the table, so I took a pen and began sketching on the back. Before I knew it I was left with this.

Its stitch! Though it looks kinda gruesome as you can see the marks of sonic n the background and so it looks like stitch has had surgery on his head. I also did hello kitty on the on the side and the disney logo on the other side, but I was just playing by then.

So it was a fun, but exhausting night.
As I said, it has been a long time since I have spent that much time with my sister, it was nice to catch up, but also in a way, she got to more so see where I am up to health wise at present. After walking up the path, she called me darth vada as she could hear me a mile off and at one point she asked how on earth I manage to sleep as I was coughing so much.

My cough did seem bad that night, but I think that was because it was warm in her living room, but the cough has still stayed to this point, so yeah.

Things are strange with my breathing. I would say that it is not to bad at the moment, considering this time frame after surgery, is when I would usually be seeing my surgeon. But then, when I think about it, it is still bad, I just think I have adjusted to it now.

When I first got the trach out, it was like wow my breathing is great and I was suddenly able to do things. Then it started to go downhill and every step down felt like a big deal. It was a huge step from feeling great to needing surgery. Now however, even the surgery dosnt leave me feeling good, so its not such a big step anymore and I in a way expect it.

I walked up the stairs earlier and mum was in her room, I was putting washing on the rail to dry, totally oblivious with my mind on other things, until I heard my mum shout something, I put my head around the door as I couldnt make out what she had shouted. Turns out she had shouted that I sounded like a steam train and the fact that she could hear that through a closed over door.

So I dont know. I think perhaps, my breathing is now, at the stage I was at with the trach, minus the horrible bits that go with the trach. I guess I will find out more next week hopefully. It just gets annoying as there is so much that I want to be doing and getting on with my life. The things my friends are doing, working, house buying, having relationships, having fun. I will get there one day, I know I will, for now, I just need to pace myself. I can still do most things, I just have to do them slower than I would like.


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.


I should probably analyse all that. But I gues, just looking through myself, I can see why I am so tired. It really is 2 steps forward and one step back.
I shall write more tomorrow I think.
Right now, sleep.

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