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Hopefully a quick update as I dont really have much to update.

A quick backtrack as my video was awful. Last week I ended up back in surgery, less than a week after my last one. Turns out the area of trachea above my trach has now collapsed. This means that I have once again had to ditch the speaking valve, making speaking a lot harder. You would be surprised at the amount of times you want to talk, when your hands are tied. To speak without a speaking valve, I have to block the hole on the front of my trach, while I speak, then uncover it to breathe in again. This means, when your standing washing dishes, and someone asks you something, you can answer. Or if you touch something hot and shout ouch, the sound dosnt come out. It gets frustrating. Although I am once again having some issues below the trach, so often I can get short sentences out without covering it. As they are short sentences, I tend to sound like that kid of the Malcom in the middle show.

Anyway. I am seeing my surgeon this week to discuss where we are up to and where we go from here. I spoke earestly in a email to him. There is a minimum of 2 years until the research for the surgery that may help me will be availble. Right now, with both ends of my trachea collapsing inwards, it would be a miracle at this rate if I make it to the 1 year mark, never mind the 2 year. I am getting tired, tired of surgery, tired of pain, tired of being tired. I think perhaps its time to review where we go now.

Half the time these days, the thought of leaving the house, makes me want to cry at the effort it takes. I have more bad nights than I do good nights. And today, virtually every breath I have taken has made a squeaking sound. A squeaking sound, like a squeaking toy, is from the air trying to get through a small gap. My lungs take twice as much effort to pull that breath in and out. It is exhausting.

And I know the lungs cant hurt as they have no nerve in them, but I am getting a heck of a lot of pain along the scar site from my lung surgery. To the point, where today, I even asked mum to give me some physio on that side to help it.

I have a feeling that this appointment, is probably going to be one of the hardest appointments I have had to face.

In other news, well not really other as its on the same tracks, but the world leading surgeon for tracheal transplants, the one who is supposed to have been making leaps and bounds and fixing my type of issues, was arrested last week for fraud. So yup, thats going to suck. Though, it does now mean, that I am definitely under the worlds leading surgeon for tracheal surgery.

I am doing everything right, I am in the best place and I have the best people caring for me. Other than that, lets just play on luck.

I have my niece here tonight, so some quality time and cuddles might be a good option.

Time is a wonderful enemy

I should probably be sleeping now, but I still feel the need to write.
I dont know where to start or what I want to say, so bear with me, this will be long and probably not much sense.

On tuesday I got out of hospital. I was meant to spend the entire time on IVs, but by Sunday, my veins had gone again and after many failed attempts to reinsert them, they gave up and switched me to orals. My infection markers where coming down yet I still felt rough. I was discharged Tuesday, still on Orals, but as I put it to them, everything they were doing in the hospital, I can do at home, so I saw no point in staying in. Its now Saturday and I feel the same as I did the day I went in. My guess, is my infection is worse now than it was then and my trachea keeps blocking up. But truth be told there is little they can do. So Tuesday afternoon I made the 3 hour journey home.

Thursday morning, I then made the 3 hour journey back to London. I had been asked to attend a research meeting. The meeting was with the professor who is fronting the research and surgery into the tracheal transplant. He knows about the website I have been building for airway information and if very encouraging for it. He wants as much input as he can from myself and a fellow patient, with aims of getting other patients invovled.

Whilst in London, I spent some time with a friend and we saw, the show, the lion, the witch and the wardrobe, which was truly a wonderful production and a good night overall.

The meeting was fascinating. He is a highly educated professor and his ideas and research are amazing. The possibilities that it paves the way for in the future are endless. To think of a world, where people could go through transplant without the fear of rejection, without medication and all the problems they cause. The amount of lives it could save is endless. And to think that in 20 years time, people with airway problems like mine, would come in for one op and be fixed with no more problems.

The meeting was also very gratfying. That these professionals want my view on things, that they like the work I have done and value my opinion. I like that I have given them things to think about and ideas that they may not have had before. Again the future possibilities. In future times, it could be a job that combined many of my skills in one go. Nursing, medicine, computers, design. The scope for progress is huge and the thought that lil old me could be part of such a huge amazing thing, is truly mind blowing.

But there is always a flip side to these things. I now know a lot more about the research, where it is up to and what it entails. And in short, its a long way off. They are applying for grants now, from the time they get the grant, to the time patients will begin benefiting from treatment, is a minimum of 18 months, but as research goes, probably a lot longer.

In all respects, 2 years isnt that long, it will probably fly by. But when I think about the last 2 years, they have been very long, very hard years and they have taken a huge toll on myself, my family and my friends. And then I think of the last month. The last month has been harder still. They cant keep my body free of infection. The only way I can think to give a general idea, is for people to think back to the last time they were sick, a time when they felt sick enough to go to a doctor and be put on medication to cure it. Well, that is how I feel, but its not a temporary thing, its living with the thought that, things are going to carry on like this for the forseable future.

Infection drains you, it puts your body into fight mode. When you awake in the morning the first thing you think about is pain, when you go to sleep, its the last thing on your mind, be it lungs, joints or neck. Through the day, you feel permantly tired. I could and have last week, slept for 20 hours a day, with no problem. Even showering becomes a dreaded task as it just takes too much energy. And the other problem with infection, is that it always gets worse. The meds become less effective, the symptoms get harder, it just takes so much out of you.

Where is this going. I honestly, dont think that I can make 2 years like this. I feel like I have run a marathon and not the energy to go on. Truthfully I dont want to die. I want to be independant, I want to see my niece finish school and go to prom, to college, to uni. And every time I look at her this weekend, I just want to break down, the thought of not seeing her reach those stages is hard. I love her so much it hurts sometimes.

I had contact with my surgeon today, on a Saturday and everything, he really does go above and beyond his duty, I am so thankful for him, he is one of the good guys. I have an appointment with him at the end of the month and, in his words, we are going to discuss all the possbilities for keeping things comfortable. I guess then, we shall decide how hard to fight from now on in.

And between now and then, I am going to enjoy all the hugs I can get and have all the fun I can mange. And I will savor every moment of it, because every moment is prescious and everyone is special.

Jinx (this should have been posted last week)

Just noticed this is save as a draft grr, i pressed publish. Stupid blogger and its new layout.


Jinx: A person or thing that is believed to bring bad luck.


Do you believe in Jinxing?
I am not superstitious. I dont believe that an act such as stepping on a grid can later bring you bad luck, not do I think the earth will collapse should I walk under a ladder. But jinxing is different. There are things that i dont want to mention for fear of jinxing it, but deep down, is it fear of jinxing, or fear of telling people something which may not come true.


I am balanced in that place right now, where there are so many things that could happen, but might not happen. Between holidays and medical stuff everything just seems to be waiting, waiting for something to change.


My energy is slowly coming back meaning I am recovered from my last surgery, however, the tightness in my breathing is also creeping in already. I wanted to post on my last admission on where things were up to, I feel like I have been promising for a long, but each time, wanting to wait for me details to be confirmed. But they never seem to be.


After my 3rd open procedure a few months back was deemed unsucessful, my surgeon was honest and basically said, he is rapidly running out of option for treatment and that was why the trach went in. I was reffered on and told that I would be a good candidiate for transplant and later than that I was told that I had been accepted, but it would be a long process but probably happening within a few months.


Last month, I attended my own case confrence, by luck, I was able to be there, when its not a place patients normally get to go. From what i learnt from it, transplant, if it is still an option, is going to be at least a year away.


Its hard to hear that, when you have everything on pause, but alas I have little option at this stage.


What is harder, is that I have been called down to clinic this week. Now bear in mind, that in the past 2 years, I have only been to clinic maybe twice. I dont do clinic due to the traveling. I have made sure that they do want me with at least 2 doctors. And now, I am curious as to what they want me at clinic to talk about. 


I have a terrible feeling of doom, like its going to be bad news of some sort. Lets hope I am wrong.

Be careful what you wish for.

For so long, I have wanted to meet like minded people in the same sort of situation as me. 

I have found a few people, yet it has always been differnt, all in differnt postions or places of treatment.

This week, I met two people, all in the same sort of place as me, all with the same views and all stuck. 

and after all this time of wanting to meet others, I wish I could take it back, I wish they were not going through this. I want my illusion back that tracheal stenosis is rare and that those whose treatment fails is even more rare. 

But the illlusion is shattered and I cant go back now. and it hurts so much to see them suffer. It hurts.

What adds to that hurt, is comparing experinces, I am slightly ahead of them, having had 3 radicals compared with there 1 and 2 and so they look at me for hope and I do try to give it, but this week, my hope too has been broken. And this time, I think it may take a while to repair.

Let me play the last day or so back.

The weekend was shrouded in pain and panic, though I had a great time. I went into hospital Monday evening, you can tell I am a regular as I dont even get shown to my bed these days, just told where I am as differnt staff shout hello.

Monday was a late night. I started talking to the 2 girls on my bay. One is the same age as me, from Cornwall and one is older, with kids and lives not that far from me. We compared stories, not just medical, comments off rude people, excusses we have given, reactions and tales from ICU and hallucinations. We all have very dark senses of humor, but I think most people who go through similer things have that in common.

What we found more so that we had in common, was that we had each been told that things were going to get better with the next surgery, until that fails and you start again. We have each been told, that it is very rare for the radical procedures not to work.

Surgery the next day, went ok. The stent was removed with no trouble. I awoke in the recovery room, I recall asking for pain meds as I was in agony, then I watched the nurse go to get them, whilst she stopped by the nurses station to have a chat and then speak to someone in the staff room. By the time I got my pain meds, pain was the last thing on my mind. 

I couldnt get the air in easily. I was using my accessory muscles. I told the nurse this, to which she told me my sats were fine so I was fine. I thought here we go again. I think my problem at this point, is that I remain to calm. I told many people I couldnt breathe, in the end they sat me up more, but I had already hunched over to give extra support to my chest. My muscles were burning so much.

At this point, my surgeon walks past, seeing that I was awake, on his way past he came to tell me that everything looked good. To which I gasped at him and said, in very broken sentence, Great. Just. Wish. I. Could. Breathe. Now.  He kinda looked at me and then said, oh lets see who is caring for you. One of the anesthtic docs came in and she wasnt happy with things, then my actual anesthtic doc came in and lsitened to my chest and said I was badly ratteling and had a restictive wheeze. High flow oxygen was started and I had a large adreneline nebuliser. Within 30 mins, things had settled. There had been swelling upon removing the stent which was what was restricting me. By this point, I was exhausted, but had to stay in the recovery room till I got the all clear, so a 30 min stop turned into a 4 hour stop.

Later that evening, I spoke to one of my favourite nurses, who is leaving the ward. I asked her some general questions. The main one being, how sucessful she thought the radical procedures were. She said if the first one works, then great, but if it dosnt, or if its post intubation stenosis, then the chances are you are going to need a more and more radical procedures and the best you can make of things, is dependant on how long oyu can go between lasers and your quality of life inbetween. Why couldnt anyone have said this long ago.

I also found some more info about my last procedure. I was meant to wake with a trach in place, but there were complications. Because of the amount of surgery that has been performed on my trachea, my trachea has now hardened like bone. The fear is, if they put a trach in, my trachea will literally shatter, leaving me no option but the trach.

And so I conclude, that I am rapidly running out of options.

Every radical procedure I have gotten worse after. Every laser treatment takes me longer to recover from and I never gain back what is lost. I cant keep living with surgery every month, its too much, its not way to live, and everyone leaves me more restricted than the last.

Transplant has not been mentioned since.

Now is where we find out how far I am willing to fight for life.

I am back in 2 weeks for laser. If there is scar tissue, I am going to demand to see the surgeon in clinic the next day.

If radicals and laser no longer work, the only other option I can see is to go for the permant trach.

but neither is that straight forward. 

If it goes in, it stays in, there will be no chance of it coming out ever. It will be my only airway, so should it accidentally fall out like last year, it would be an emergency situation.

If my trachea split, it would also mean, that my voice would gone.

Is life suistainable, when you cant talk?

But that is not all.

As we found with the trach last time, my body disagreed to it. It was constant infections and the strain on my windpipe made it close more and more.

With a trach, I would say I would get perhaps 18 months.

I am so thankful and so happy to have gotten the chance that I have, but right now, I am running out of options. Laws are not going to change in time.

When I talk to my surgeon, if he confirms all of the above, then I think the next question needs to be, what will happen, how will things progress if I stop treatment. And what support can my family get to deal with that.

As morbid as it sounds, I have to be practicle at this stage, there is no point in prolonging the envitable when it only draws out the pain and suffering of all involved.

Something has to give.

There has to be more.

I have slowly started speaking to my parents about it.

I think my dad gets it, Mum is still holding out hope, along with the thought that perhaps life with a trach and no voice would be enough of a life on its own.

thinking

The last week, has given me a lot of time to sit and think.
It also gave me a few like minded people to bounce thoughts off and left a few things clicking into place.
Whilst I am still hopeful that this surgery will work, I went into it with a really good gut instnict that this was going to be the one. But as time goes by, that instinct fades and I cant help but think what now.

These reconstructive steps, where always going to be the answer, the fix, but when they have failed me, there has always been the back up, that one day, a trachea transplant maybe an option, with less of the complications that the reconstructive surgery has. But with time also comes knowledge and I know so much more now, than I did at the start.

Transplant, is a new procedure, with no firm records of success. However, there have been more surgeries than are currently mentioned. The successful ones get the attention, but in the back waters of journal articles and research papers, there are mentions of unsucessful ones, or ones that worked, but other complications still resulted in death. In all, there is reason why it is not a current viable UK surgical option, it is its high mortality rate, which sits at about 50% for the average person with no other medical complications. However, the biggest complication is infection, which was the result for many of the deaths. Give my health status, my immunity to antibiotics and ability to infect anything quickly, my success rate would be below the 50%.

Take out all the aspect of law right now, if I were to be offered the surgery tomorrow, given the above factors, would I take it? I guess that would be the million dollar question. To say yes, I would have to go into it, knowing there was a very high chance I would not come out. Would I be ready to die? I craved it for so long. But in the last year I have built a life I love, relationships, hobbies, achievements and goals. Could I just drop all of it. right now, I dont think I could. I would have to say no to surgery, if it became available.

I am rapidly running out of long term solutions. The reconstructions are not working and as I have discovered,  monthly surgery, is not a real option I could live with. This would leave me with two other options that I know of. A permant stent would be one. Right now, I have a stent in. It has lasted a week until my breathing has detoriated rapidly, I will be pushing to make it to 2 weeks.

The last option, leads back to the trach. I do stand by what I said in the past, I think if I had stayed with the trach, the chances of me still being here would have been slim. Again, the rate of infection and hospital addmissions would be silly.

At this point, I dont know where I stand. I think, I really need to talk to my surgeon and see what the next step holds.

Im not ready to give up, nor ready to say goodbye. But there must be more options. There has to be. I need hope to be restored. I need a goal.

Preparing for the worst, and getting something not prepared for

I have been staring at this page for a while now, wondering what to write. Truth is, I am exhausted in all ways that I think I can be exhausted. All the while, still being amazed at the highs and lows in life and how they can all be thrown together to make a big jumble. I prepared myself for the worst, or what I thought would be the worst. And now? I am left with a big jumbled mess that I have no idea where to go to next. I shall explain.

I was due in hospital in London on Monday for the usual laser and dilation, but with the big boss surgeon as the previous surgeon had had some concerns about my airway. Mum was going to come with me so we booked a hotel for the night before as I have to be in the hospital for 7:30. As it turned out, my dad was off work this week so he decided to tag along. So I decided to go a day earlier and meet my friend so I could give her her christmas presents and generally have a catch up.

So I went on Saturday afternoon and after some trouble with traffic and missing my train, I eventually met up with her and did some quick shopping. Then we went out for yummy tea and back to hers for a natter and some wine.

It was good to have a proper conversation. To be social so to speak. In a way its become to easy to just kinda isolate myself, or take bad moods out on others. So we had a drink and ended up going to bed at like 3am.

I had to meet my parents at the station at 12:30 the next day, so I didnt sleep to well, mostly waking a lot thinking that I had overslept. Met them and took them to Camden Market as they had never been and I thought it would be an experience for them. I love Camden, its one of my favorite places in the UK. Mum liked the whole shopping expiernce and seemed to like some of the items there. Pretty much picked up a Pashmina to go with every outfit as she feel in love with the one I got in December. Dad said it was a very weird place, but he seemed to like it, especially the free food samples they all hand out ha.

By Sunday night, I was pretty beat, but we decided to go out for tea, which was fine by me as I knew I wouldnt be eating much the next day. We went to O'neils, and it was yummy, that was in Islington angel. Though, we ended up on the wrong bus home, got lost and had a 20 minute walk back to the hotel.

The hotel itself, is not the nicest of places. Everytime you moved in bed, the springs clunked and the room was pretty cold all night. Had to be up at 6:30 and walked to the hospital. The registrar came and did my consent form and the anestists took all my details. I saw my actual surgeon (big boss guy) for about a minute before I went in and he commented on my stridor (noisey breathing) and made me sit down right away. He seemed pretty concerned at me walking around making so much noise. The anestists had some visiting students in so was explaing a few things to them, which I enjoyed anyway as I am nosey. Basically saying that they would normally do a gas induction, but given my lack of ability to breathe or clear gasses out of my system, that it would have to be done with chemicals until the blockage was clear.

So I was off to sleep no problems, apart from them having to keep me at a 20% angle instead of flat as I could not breathe at all when I went very flat. Now normally, these scopes, I am back on the ward within an hour, this one, I was really groggy coming around from and I didnt get back on the ward till about 2:30 hours. I kinda fitfully napped for a while. Its strange as last year when all this was going on, I used to come around in the recovery room and be having full conversations with the staff, yet now, it seems to take me hours to come around.

Whenever I came around on the ward, I kept asking for painkillers as my throat was so so sore. She kept saying I will get you some written up now. I also asked several times to go the loo, in the end, I got fed up asking, I clamped my own drip off, got changed under the covers into my PJs and was just about to waddle off down the ward when my parents came in. Mum exclaimed that I looked crap and should sit down, but I went the loo anyway.

I spoke to mum and dad a little bit, told them I didnt have much info, but I remember my surgeon, saying he would come talk to me properly when I was awake more. By this point, I was allowed to drink and again asked for painkillers, to which I was told, we are waiting for them to be written up.

Mum and Dad decided to stay with me incase the surgeon came, as I am rubbish at remember things at the best of times, never mind post surgery. About 2pm one of the registrars came up to talk to me. He told me everything had gone fine and there was nothing to worry about. He mentioned that there was still tissue there that shouldnt be, but it will eventually settle. I asked if I would get to see my surgeon, and he said he wasnt sure as the surgeon was really busy.

I was at last bought some painkillers after asking the doc for some, only 5 hours after asking. Managed some food and dozed for a little bit. I dont know what it was, weather it was a flashback or something, but the ward was so very very hot, the sweat was dripping off me. I remember waking, being in pain and dripping wet. Mum and dad sitting next to my bed watching me. I couldnt really piece it together, just kinda kept drifting in and out of sleep for what seemed like hours, but was only a short time in reality. 

A nurse, when she gave me my painkillers, had finally detached my drip, that had been hanging empty for hours, but just dropped the tubing on the floor. It was annoying me, so I tied it up where it was meant to go, waiting for her to come back and dispose of it.

She then came back to tell me that I was written up for some IV antibioitcs so I would be staying in for a couple of days. A while later, she came back with my IV meds and starts putting it through, it hurt and burnt like hell. I have had a lot of IVs in the past some of which I have reacted to, but none of them have ever been this painful. I told her it was burning, she just said, yeah, its a strong med, Mum even looked concerned. I was squeezing a pillow as tight as I could trying not to scream out, trying to tell her that it was hurting far to much, I did in the end burst out crying and literally screaming, while all the other patients sat and stared at me. My arm turned bright red, she still didnt stop, just pushed it through quicker.

My wrist started to blister, so the nurse decided to rub it vigorously to get the blood flowing. Now even I know, you dont rub blisters, especially in hands that are not even wearing gloves, so I asked her to stop, then told her to stop, then put my hand over the area so she couldnt, seeing as she wasnt listening. She then sent for a bag of saline to flush it through my veins. As she gets the bag, she gets hold of the wire, that she left on the floor earlier and goes to connect it though an IV. Now bear in mind, that even if this wire had not been on the floor, it would have been uncapped for hours in a hospital environment. I told her to stop again. She said its fine, I said its not and covered my wrist until a clean set was set up.

This was my wrist about an hour after she finished messing. The blisters have mostly gone, but you can still see a big one under the tape where it goes white in the middle of the red.

Well eventually, my Surgeon came on the ward and came over to talk to me. At first he seemed to be saying the same thing, everything looked ok, just the scar tissue, so I asked him straight out, will the scar tissue ever stop forming, I mean we are at nearly 6 months post op now and things dont feel like they are getting any better. He said, that there are no predicted out comes, that it was the first time my op had been carried out. I had two type of reconstruction. The big one, where they take your rib cartilage and open part of your trachea, and another one, where they cut out a big chunk of trachea and stitched the 2 ends left together. As the two ends have been stretched, some narrowing is normal, and the two different sites will take a while to heal. That being said, he would have expected them to have healed by now, and yet my trachea was still not healed. He hopes that my body is just being slow with it having all the other things going on with it.

He then asked me what life was like in between the surgeries, did I find they helped. I explained that the 2 days following are hard work as there is swelling and crap on my chest plus the post anesthetic thing, but after that, things kinda settled back to the way they were before the op, but gradually getting worse the more I tried to do, when I have to increase my nebulizers and rest more, but that dosnt seem to help much either.

He then gave me that look. That look that says, I dont want to tell you this but I think I have to. He said that he thinks now, that my breathing problem is in relation to the vocal cords, that they are stiff and not letting air through the way they should. I asked the dreaded question of where do we go from here. He said, we can try taking a chunk out of the vocal cords and see if you can breathe. I said, if you are taking some out of the vocal cords, will I lose my voice. He said it is a possibility, I may just lose some of my voice, or it may just break at even lower tones than it already does.

He said he would discusse it more with me next time he sees me, he then asked the registrar to book me back in, the reg said I have booked her in for 2 months, and he said oh no, thats far too long, make it a month, but Kim, if you are struggling, get in touch and we will fit you in sooner, we can get you in same day if needed.

I was holding things in at that point, dreading looking at mums face to know all this. I asked him when I could go home, and he said in a couple of days, I looked pleadingly at him and asked if it could be made sooner, he said, ok I will compromise, you can go tomorrow morning. I then asked if it would be possible to go that night. I said it would be safer. If I went the next day, I would have to travel alone, but if I went that night, my dad was off work and could keep an eye on me and such and I do live right opposite a hospital. He said that he wanted me on IV meds, and I showed him my wrist and reaction to the meds, so he said I could switch to oral meds and agreed to let me go.

So that is what this whole thing is going to come down to. What is more important? being able to talk? or being able to move and breathe at the same time? But I am gready and want both. And the pioneering surgery I thought might one day help, the prospect of a tracheal transplant, that is out of the question again now. The transplant does not involve the vocal cords and so I would not be eligble now that it is glottic as well as sub glottic stenosis. 

I tried talking a little to my parents later on, but they said they didnt hear much, so I explained bits and I have explained a bit more today. Mum looks at me with that look of sorrow. I can read it in her face. My mind reels back to suicide, if I had succeed last time, I wouldnt be going through this now and I wouldnt have put my parents through everything. I know that mum in the past has worried that they made the wrong descion saying yes to transplant and I think now she feels it even more. That perhaps, sometimes you can be beyond saving. I hate that she has this guilt, but on the same account, I dream of the peace that the end brings. I dont know how much longer I can continue to fight this. To make life changing descsions. 

Just exhaustion

To my parents as well, I can see them age virtually daily.

And they have so much more to come.

Is t positive? or Negative?

I spoke to a close friend last night.
Actually spoke to them in person.
I mentioned to her about the whole, leaving happy memories with people just in case.
She said that I shouldnt think this way, that I should be being more positive that everything will work out ok.
Is my thinking negative? or has it become just a quiet acceptance and my way of making it positive?

We were also talking about future prospects and how surgery fits in with those.
How perhaps this surgery that is planned will get me back on my feet and if there are complications further down the line, then maybe research will have progressed and there are other options actully legal in this country such as transplant.
I said I would rather go through the hassle and just get the most advanced surgery now, so that I can get on with life.
I dont want this to work temporary.
I dont want to get into the position where I get really into something and then have to leave because of my health again.
I have done it 3 times so far and I think thats enough. Its wastes everyones time and money.

Again, she said that is bad thinking, that even if I were to get sick again, it dosnt mean I would have to leave everything and start over once I was well.
I can see her point, but I am thinking perhaps my response is a learnt response.

I do have a tendency to throw myself head first into the things I do.
I often dont have the energy to do things, so when I get the urge to do it, I do it all the way like 120%
But I had a full time job and friends, then i gave all that up to be in hospital for my liver transplant.
I trained to be a nurse for years and then because I was ill and tried to hide it, I had to leave that.
Then i trained in computers and made lots of friends, but had to leave due to my mental health.
I went back and restarted the computers but had to leave again because of my breathing and hospital admissions.

I think my thinking is fairly positive. I mean I keep trying and going back.
But its just come as a kind of expectation that something will happen to make it impossible to carry on each time I get into something.

I dont know.
I have a lot of fears, but im trying to ignore them and focus on the positive right now.
But what is positive?
And is my positive different from other peoples positive?

Our greatest glory is not in never falling, but in rising every time we fall

Today, the world feels a little easier.
I feel more comfortable in my own skin.

I have finished the anti biotics so maybe my head can have some space once again.
For some reason, I turn into such a cow on them, bitching at everyone.
But today I say goodbye to them and begin to feel more myself.

I didnt sleep last night.
I accidentally saw something that was not nice for me to see.
It was in my mind all night.
Everytime I drifted off, I woke pretty soon after with a jump.

So after dinner, I was sitting on the couch.
I felt more grounded. Mum sitting next to me, dad on the other side of the room.
I felt safe. I curled up and I slept.
Real sleep. Sleep without dreams, sleep without rude awakenings.

I slept on for 3 hours, but I felt so much better afterwards.
I had the energy to do some of my laundry.
I tided, dusted and vacuumed downstairs.
I finished setting my dads new phone up with ringtones and games.
I taught him how to use it.
I finally emptied my bin (Been promising to do this for like the past 3 days)
And I replied to a load of things I have been putting off.

Im feeling more how I used to feel now.
Breathing still isnt great, but I am determined not to let it get me down.
I have prospects for the future.
There may eventually be an end to this, a cure.
It may result in lots of surgery and hospital time.
It may eventually result in a transplant.
But, if it means I can breathe, if it means I can live without the nebulisers, dressings and tubes.
Then, it will all be worth it.

And if it dosnt work out that way, then least I know that I gave it my best shot.

I found a letter the other day.
I wrote it when I first got out of hospital the very first time.
It was about a hallucination I had had while in ICU.
Mother Christmas was there, she was tucking me up in a patchwork quilt on the sofa so I could see the christmas lights on the tree.
She asked me what I wanted most.
And I replied that I wanted to have one last real Christmas with my family.
To tell them all what they mean to me.

Well I got that chance. And though I doubt I have told my family what they mean to me enough.
I have done it to a degree.
And I still have time to do more.
I hope they know that I love them and appreciate them all.
My family, my friends, my friends who I consider family.
Everyone who has influenced my life in some way.
My thanks go out to all of them.

Mentally, I am getting better.
I just have to keep fighting a little longer to fix the physical.
This is going to be a good thing.
And who knows where I go to from here.

Tracheal Stenosis

So you have probably heard me mention many times about my tracheal stenosis, but I dont think that I have ever explained what it is.

Tracheal stenosis is basically a narrowing of the airway (trachea) My main issue is subglottic stenosis, which is the region just underneath the vocal cords. It can occur for no reason, but this luckily dosnt happen that often. It can also be caused by a disease called Weggners or from trauma or chemicals. In my case, it is caused by prolonged ventilation and previous tracheal surgery. I was ventilated for abour 18 days using an endo tracheal tube (Normal tube that goes through the mouth) but eventually had a tracheostomy put in to make me more comfortable while ventilated. This was in for about 2 months before I managed to get rid of it and allow it to heal. About a week after it healed I developed a serious case of Pneumonia and had to have the trach put back in to allow ventilation again.

So what symptoms are associated with tracheal stenosis?
The severity of the symptoms depend upon how much of the airway is occluded, but basically anything that restricts your breathing.
So the main symptom is shortness of breath. There is also often a stridor present (like a whoosing noise when breathing, or noisy breathing.) College friends used to call me Darth Vader as they could hear me before they saw me. It can also cause difficult or laboured breathing, which can result in extreme tiredness. If the occlusion gets to bad, you can literally be fighting for each breath. Because you are not breathing as well, you can show signs of cyanosis (Which is a blueish tint to the skin, lips or nails) Because it irritates the airway, stenosis can often cause a lot of coughing.

Tracheal stenosis can be diagnosed in a few different ways depending upon your presenting symptoms and your medical history. Breathing tests, where you breathe out as much as you can into a machine, can often indicate that their is a restriction and how server it is, but they can not locate where the restriction is. X Rays, MRIs and CT scans can all show where the restriction is giving the surgeons a better idea where they are working, however it is difficult to know what the tissue is like using a scan.

Laryngoscopy and Bronchscopys are the best form of examining tracheal stenosis. They allow the surgeon to have a fully look at the area and take samples should they been needed. For me Bronchscopys became my life at one point, where I had 5 in one week.

Who looks after a tracheal stenosis patient.

Usually 98% of the time, you will be looked after by an ENT (Ear, nose & throat) doctor however you may also see other doctors too. I was first reviewed by a Chest doctor due to breathlessness and repeat infections and hospital admissions. After trying a few treatments and tests, he reffered me to the ENT doctor.

The ENT doctor did what they could, but the damage in my throat went fairly far down so they then refered me to a Thoracic doctor. The thoracic doctor tried a few things that didnt really help and so I was discharged for a while.

Things gradually got worse and I was sent back to the ENT doctor, who liased with the thoracic doctor and both went to theatre with me to work together. I am now cared for by these two doctors, but I am seeing a specialist in London in ENT.

What does stenosis feel like?

There is a little test you can do to try it yourself.
Get a piece of card and cut some holes in it. They should be about 2mm, 4mm, 6mm, 10mm and 12mm in diameter. Put your lips over a hole and blow out. This is what it would feel like if you have that level of stenosis. For those with stenosis, do the same activity starting with the largest hole. Once you feel resistence, that is your level of stenosis. I often describe it as trying to breath through a straw. Perhaps try getting a straw of about 4mm-6mm and put it in your mouth and plug your nose. Attempt walking around and getting up the stairs to see how it effects you. People without stenosis begin to feel resistence at about 8-10mm.

Subglottic Stenosis scale

You hear people talking about percentages in lung function which is how much of their lungs are useable, but with stenosis, its more about how much you can breathe at once. Subglottic stenosis is graded by the occlusion to the trachea.
*Grade 1 - Obstruction is less than 70%
*Grade 2 - Obstruction is 70-90%
*Grade 3 - Obstruction is greater than 90%
*Grade 4 - Full obstructed.

In the past year, I have gone from grade 1 to grade 3, where I am now. Without my trach, I would be breathing through less than 10% of my airway, which would be less than 2mm, hence why I have virtually no voice.


How is it treated?

Treatment will depend upon the level of stenosis and how it effects you.
If you hardly notice it day to day, I would advise not going for treatment

Providing you are not in a position where your airway is compromised (Where there is a chance it can quickly become fully obstructed) generally the surgeons will start with some laser surgery, which basically burns off the extra tissue that shouldnt be there. They may also use Dilation, which is a technique where they cut into some of the tissue, then blow a balloon type thing up to help expand the airway. These can all work in the short term but you will often require more.

The next stage is to try placing a stent into the airway. A stent is like a piece of material that expands and holds the sides of the trachea open. Stents, for most people can work long term with no problems.

I had a couple of laser surgeries on my trachea to remove the stenosis, but the area was so large, that my trachea became floppy and unsupported, meaning that it would not hold itself open. Therefore a stent was required to make sure the trachea did not collapse upon itself.

My body however, did not like the stents. As a for of fighting off the stent, my body tried to cover it with scar tissue, which once again blocked my trachea. The tissue was removed a couple of times, but kept coming back quicker each time, making my airway very unsafe, very quickly.

Therefore, the next treatment after a stent, is a tracheotomy. This is a tube place in the throat, that comes out just under the chin. It by passes the stenosis so avoids the danger of the airway completely blocking. However, trachs are not the best option long term. They have a high infection risk as well as having other risks and limitations such as the risk of water going down the tube.

The next stage of treatment is classed as open surgery and again varies depending on the level of damage. A tracheal resection can be performed. This is where the trachea is opened and the damaged rings removed. The two ends are then rejoined and stretched to create a full trachea. This is major surgery and involves a lot of recovery time. It might even be nesscary to have your chin stitched to your chest to prevent the trachea from moving whilst it heals. However, this kind of surgery has shown great results, with few complications. The downside to this surgery, is that generally, they can only remove upto 4cm of trachea in an average adult. (Last september, I had 5cm of damage, but it has since increased)

The other treatment option is tracheal reconstruction. This involves taking some cartilage from your ribs. The damaged tracheal rings are then broken, to have either one or two gaps in them. The rib cartilage is then used to fuse the gaps in the tracheal rings and therefore holding them open. This is a long and painful process requiring a few surgeries as time goes on to remove any scar tissue that may form. It is also not a good idea for idiopathic (No known cause) of stenosis as the stenosis can return fairly quickly.

Future advancements

There is currently a lot of research being put into tracheal transplants. This would involve putting a donors trachea into the patient, which can be tricky as it is a tissue which needs a full blood supply. Scientists have found ways in which they can strip the donor trachea of its cells and coat it in the patients cells, therefore tricking the patients body into thinking that it belongs their, so not to attack it, like would happen with a normal transplant.

London!

As most have you have probably already figured out, I am indeed back from London.

Stupid computer issues are still being annoying though, I tell you the company my computer comes from are the bane of my life. My computer is involved in my life so much, that to go without it for any period of time is hard, but its over a month now since I had a full working laptop urgh.

I rang to tell them it had a fault, it took them nearly a week to collect it, they then had it for over 2 weeks and another week to return it. I get it back today, unzip the case (It was sent off as laptop, charger and case, all with my name in large letters on it) To find only the computer no charger. What use is that!! By the way it was the cooling system that had gone. After 2 weeks of not hearing from the company I got my mum to ring them and their reply, yeah its back sitting here, well gee thanks, weren't you supposed to email/call? When asked why it had taken so long, they said because its an insurance job, payments had to be sorted. Ermm no, it was a warrenty job, nout about insurance. When I get the letter back today, it was sent to sony in Germany for repair as it was a manufacture fault. So the company didnt even do anything with it except ship it and return it and they still mess it up.

I paid extra when I got it to upgrade to a sony as they have a good rep, never again. Thats the cooling system and motherboard both gone in like 8 months on a top spec laptop. They send their appolgies and a free cleaning cloth (Like you get with cheap sunglasses) Anyone in the north west, if you get DSA, avoid Remtek at all possible costs!

So yeah, back to London. It was fun. It made me think a lot, but fun all the same.

Got into Euston station about 1, so I took mum out for a taste lunch in Prezzo, which does the most tasty Italian food. nom nom



We then took the short stroll from Euston to Kings Cross and booked into my mums hotel room, dumping half my stuff and all of her stuff there then straight back out to book me into my hotel (or hospital hehe.) My letter said I had to be there for 4, we got there about 4:30. The letter said ward B, which had a big sign on the door saying shut go to ward C. Went to ward C and they directed me straight into a room that resembled a fish tank. Full windows the length of the room. Full monitoring until next to the bed and a load of equipment such as resus trolley, and about 4 oxygen ports. (I was later to find it was a HDU room I was in)

Pretty uneventful to be honest. They said I would be on the early morning theatre list, but didnt end up going down till about 3. Under for about an hour. Pain was manageable, but when i came around it felt like someone was sitting on my chest. I tried telling them, but the drugs where still in my system and I couldnt lift my arm to my neck to talk so I began to panic. They ran a few nebs and gave me more pain relief and it seemed to ease off.

Was discharged the next morning with a little bit of information. (See previous post)

Was pretty tired so didnt do very much, before putting my mum back on the train. I went to stay with a friend. we had a pretty laid back week, lots of munchies and films, which was ideal.



And of course drank lots of food coloring.


Went to Camden one day and drank lovely milkshakes in an American Dinner. I also managed to finally find a nice bag for the summer to carry all my junk around (I usually have a black Jack Skellington one, but black really dosnt look good in summer)I needed to to go across my body to distribute the weight, but big enough for things like alco gel, spare tubes, drink and most times my camera. (I dont leave the house without spare tubes and tissues and a drink)


We also had a day at the zoo. We saw Otters.


A gorgeous Galapagos tortoise.




I found Nemo!!


And dory! (Yes I love disney)


I found a pushmepullyou (Anyone who dosnt know what one of them is you need to watch http://www.youtube.com/watch?v=niKkURpdzIQ&feature=related (wont let me embed) but the 1967 version of Dr dolittle is the best one!! )



There were lots of bright colored birds

Including ones that used the same hair color as me :)


Lots of bright butterflies that would come and land on you.


Giraffes!


Tiny baby monkeys! (On the left on top of the log)


Pumba!! (there goes the Disney thing again hehe)


And the most gorgeous penguin! They were all being fed and he was following the keeper around. He wasnt interested in the food, he just wanted a cuddle hehe.


Ah it was great fun.
It was a really big step I think. When I first got told I had to have the trach, the thing that put me off the most (apart from the obvious) was not being able to jump on a train/bus to go visit or stay with friends. I had been used to going to visit people every couple of weeks and I didnt want to lose that. Well I was already down there so I stayed and took the train back on my own. Had to take a big case to carry my nebulizer in and all my other junk like medications and dressings. I didnt take my suction, I thought, if I need it, then im not well, so I can either jump a train home or go to a hospital there.

It was difficult sticking to my routines of nebulizers and dressing changes, but I did enough to survive on for the week.

It was also a bit of a wakeup about just how different I am from last time I was there. Since I had started visiting a friend there, I always had breathing trouble due to my stenosis, but the main factor was the depression, I didnt want to do anything, but when we did do stuff, I was able to keep up. This time it was the other way around, I wanted to be out touring and seeing and doing things, but just could not keep up with everything. I used to love getting the tube as it was so quick and directed you straight to where you wanted. This time however, I dreaded it. Most the stations have escalators, which is ok, but a lot of stations and attractions in london involve stairs (my worst enemy). People would be virtually running up them and I was going as fast as I could, but still gasping. I do hate that feeling. I could never live in London, they all walk to fast.

But its a step in the right direction towards independence. And who knows, if they fix my airway maybe one day I will be able to run up the stairs with the londoners.

And the tides turn

So I arrived in London about 2ish on Sunday. Took mum out to Prezzo for dinner, it was very yum. I had rissotto and she had chicken.

Got to the hospital just after 4, where I was addmitted to ward C, funny to be on C ward considering the ward I have been on at home was C ward. I was addmitted to what I reffered to as the fish tank! It was like a glass room so that you could be seen easily from outside. Kinda daunting at first as it was technically a HDU/ICU so all the monitors and charts where around the room.

There was a lot of uncertainty about who I was and where I should be and it was decided that first thing in the morning I would be moved to another ward. This was later changed and they decided to keep me where I was as I was booked in for a HDU bed post op.

The next morning I was awoken at 6 to get ready as I was first on the theatre list. My old ward used to insist on a shower with anti bacterial soap and fresh towels, followed by clean gowns and surgical socks on and the bed was changed so that that was also clean. But in this hospital it was more so heres your gown, im going to pull the cutains while you get changed and that was it.

So I sat around for ages and at about 11:45 they finally said ok we are taking you up now. Got up there and they said, sorry not ready for you just yet, we will call you back in about 30 mins. 2 hours later they finally came for me. Canula went in fairly easily and I was off to sleep.

However, I hated waking up. Usually it does not bother me much but this was the worst wake up I have had. When I was first coming around, it felt like there was something heavy sitting on my chest. I tried telling the nurse this, but I just couldnt get my arms to work enough to get my hands near my throat. They kept telling me to relax. Eventually I was awake enough to tell them, so they sat me up and listened to my chest and such. Nothing sounded out of place so they just monitored me. The pain control was better than my hospital at home and soon I was back on the HDU.

Slowly the IVs came down, as they had been pumping me full or hartmens solution and then the monitors came off. Slept a lot but managed some food and drink then got a major craving for McDonalds. My friend came to visit, which was fun, so I got her to bring me a shake and fries. yum yum

So anyway, I spoke to one of the registras as my surgeon was busy. Bascially they now think that the way forward would be reconstruction using a piece of my rib to graft the cartilage.

They want to fit me in as soon as possible, so there talking of doing it in 6-8 weeks. It will be a day in surgery to do it, IE at least 4 hours and I will have a sore throat as well as a sore chest.I will also be in for approx a week.

I dont know a whole lot about this procedure yet. I have a vague memory of looking into it when I was first diagnosed but it was ruled out fairly quick. We shall see. I need to do some research and see where it leads.

But overall positive. They think they can do this rebuild and think they can get the trac out in about a year. So yeah, good news.

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.

Emotional Rollercoaster

It has been one crazy week on an emotional roller coaster.

First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.

It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.

Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.

Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.

Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.

Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.

And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.

I couldnt sleep last night.  Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.

I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.

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.

Its been a while

opps So I just relised that I have not updated in like 9 days.
Its been busy and very tiring.

I have mostly been spending the night on the ward, going to physio/gym first thing in the morning (which is a killer on its own as I have to be up, showered, dressed, medicated and had my breakfast all by 9:30 and I really am not a morning person) Then I have been mostly going home after dinner which is when people have coming out to the house for assessments such as fitting a panic alarm and such. And when the afternoon is free, generally being dragged out shopping 'to give me some fresh air'. Back to the ward about 7 and trying to fit in some wii when i feel upto it as more physio.

Then Friday was my birthday. The nurses woke me up mega early to sing to me and give me a present. They bought me some lovely pjs with like a hooded top to go over them and slipper socks. Was really nice of them. Then my parents took me out at dinner time. We went to a new buffet place in town called red hot, it was really yummy and I cant wait to go back again! Then when I got home my sister and her kids visited and then after that my friend. So it was a very long day and I was absolutely shattered. So much so that I felt really rough and flu like all day saturday and most of sunday.

I have spent the last couple of nights drafting up a email to one of the surgeons who was on the news last week after successfully managing a tracheal transplant. One of these would turn my life around! It would get rid of the trach, it would sort my voice and upper airway out and hopefully fix my breathing. And with it being your own tissue should mean that I would get less crap and junk on my chest so limit the meds/treatments/cleaning and infections from it. But it is a very long way off from becoming a standard procedure. My current surgeon says that it wont happen in his lifetime as a surgeon so where talking 20+ years. So I thought by emailing this guy, I might just get my name in early hehe. Although im not getting any hopes up and doubt that I will even get a reply off him. But it was worth an email.

Today I had surgery again. They basically did the same op that they performed on the 23 December. He says  what he has done will not last and it will collapse again pretty soon and to be honest I think it already has. Apparently he removed a lot of thick fibrous tissue, more than he was expecting too. But he dosnt know what to do next. He seems to want to get my trachy out and restore my airway, but my other surgeon who has been trying all kinds of different things, wants to restore my voice and get me home to recover. I dont know who to put my faith in.

Todays surgeon claims he knows someone with an intrest in tracheal reconstruction and is going to talk to him and see where to go to next, but my other surgeon said there is too much damage for reconstruction. urgh I just feel like I am going around in circles and not getting very far. Maybe I will just let them fight it out.

Or at least give it a few days as coming around from todays surgery was very very off putting. I was in so much pain I was practically crying (If you know me you will know this is rare) The pain meds they were giving me where making me want to throw up and i was shivering and shaking so violently they asked me if I had an history of epilepsy. Overal not nice. Then I spent the rest of the afternoon sleeping, even refussing drinks right after surgery, which again is odd for me as I usually drink gallows, especially when I first come around.

So maybe more sleep pretty soon I think. And review when im feeling a little bit better after today.