Difference

I still havnt published my long entry.
Yet, tonight I feel the need the write, more for me.

I have said for a long time that I dont panic, with breathlessness, in general. Over the last few years I have gotten used to it and if I am in hospital, I can cope with breathlessness on excretion. Even if that is only going to the bathroom.

The point, when it does begin to play on my mind, is when sitting still, I notice that my breathing is laboured. Generally, when sitting still most people dont notice there breathing at all, so when I notice I am noticing, I know it is a bad sign.

I have had this sign before. I know where it leads to. That is when I begin to panic. Because, I know that there isnt much further to slip. And that from this point, things can become crucial quickly.

Today is day 3 of IV steroids. I hadnt noticed much difference with them, until this afternoon when my dose was delayed. I found myself watching the clock, waiting for the relief that would come when I had my dose. Waiting for things to ease.

My breathing is getting worse despite the steroids, despite the nebs and the treatments. And that leaves me in a difficult place.

Deep down, I know that the only real option left at this point, for saftey is back to the trach. Its not an easy option, not an easy one by far. For it to go back in, is messy and will cause damage and who knows what else.

But without that option, if I were to say a firm no in writing, to a trach, then I dont think there would be long left to argue. In a way I can play things down. My oxygen levels are never really effected and so its easy for the doctors to not see the extent of my breathing issues.

But this wasnt how things were meant to be. Tomorrow is my nieces birthday. I need to be able to at least phone her and wish her well. I have no doubt that I will be able to do that. But there is more that is not yet in place. Certain insurances, making sure my parents will be ok and such. I need a few more months to put the nail in that coffin. Plus, right now, things could get messy. If I were to take real bad, and my parents are over 300 miles away, it could be disastrous.

These are the things going through my mind right now. I know I said I wouldnt go back to a trach and this isnt me botteling out. In fact, if it goes in, it makes things a lot harder again because it means that I have to go through the whole tube lengthing crap again.

I am tired tonight. My chest muscles ache as I am not able to protect my own airway of a night, meaning they have to work twice as hard to get the air in. I didnt sleep as much today as I would have pleased as I was stuck in CT most the morning. I am physically and emotionally drained. And I know I should not be making any real descisions.

But the doctors know the score. And my fate, has been sent in an email to my surgeon.

Tomorrow will bring more news.
Tomorrow is a new day with new prospects.

I exist inside this room.
But outside, the world looks so alive.
Tonight, the sunset over London looks like the sky is on fire.
The world is winding down for the night, but tomorrow is a new day.
Full of new ideas.

Love

I seem to be having a philosophical week. forgive my ramblings  (And mis spellings, I usually write before nebs, not after, unlike tonight and so my hands are shaking more than the average woman in an xrated movie)

I wote yesterday about the urge I get, to be useful in some way. Well, the other thing I often crave is love. Yes, I have an abundance of love from family and such, but I am talking more the soppy, butterflies in stomach, just want to hug all the time type of love.

I do crave that so much and in a way, I crave it in the sense that when things do get tough, I want someone there who I can turn to, someone to be scared with me, who will hold me, curl up on my bed with me and tell me everything will be alright. Someone, who can rub my shoulders when I have had a rough night and make me feel good about myself whilst coughing my guts up.

But as I think more about this, I know that this is a dream. Sleeping Beauty had to be asleep for her prince to come. Cinderella had to go the dance and so on. You need to be able to put yourself out there. A knight isnt going to suddenly ride his white horse through the middle of your living room and find himself in a deep love at first sight.

But right now, I cant put myself out there. It would be easy in a way to hide behind the reasons why. To say, well I cant talk well and I cant hear well so there is no point. Or to say, I cant get breathe enough to do it. But that isnt the full reason. Its the easy reason.

I think, more to the truth, is that I cant put myself out there, for many reasons, but mainly, I think if I want to be loved so much, then I first have to love myself.

I think, through this whole ordeal, being held against my will, the stabbing, the transplant and all it entails and after that the whole breathing saga, the thing that is hardest to deal with and has the biggest inpact, is the hatred and guilt that I feel towards myself. I cant help but feel like such a big part of me was taken away from me. I lost who I was. I was the loud, confident, successful one. The one with a big heart, the one with friends and boy friends. The kinda person that would get up and dance on a table, without even a drop of alcohol. The kinda person who went on a 2 hour hike at 4am to Tesco to buy hot dogs as I had a craving. The person who was never home. The person with a big heart who laughed a lot.

Right now, and for a long time, I dont love myself. I dont like my life and I dont like where things are headed. I hate never having energy, I hate the looks I get in public.

I know I talk a lot about giving up about how the future is bleak. But I put myself through insane procedures, painful ones that give more hindrence than help, ones that leave me in hospital for months at a time. But, deep down, I do this because I want a chance. I want a chance to take my life back. To be me once again. I know that I can never get back to the person I was and I am ok with that, she was self centred 16 year old anyway. But, I want a chance to see what I can be. To pit myself against the world and see who I truly am. To see if I am capable of becoming a person that I can once again love.

And with love becomes happiness. I want to be happy. Happy and breathing and useful. So yes, I do pin a lot of surgry. But the way I see it, I have a lot to lose. Because there is so much that I want to do and see and witness. But I cant do it like this. And I cant do it alone. And right now, my bitterness and my lack of love, has left me alone. It is rare I talk to anyone outside this house. I am 26 and in an average week I talk to 2 people. But the longer this goes on, the more hollow I become, the deep and darker the hole the inside me grows. And I can barley even accept myself, nor look in the mirror whilst the whole is still there.

I hate that the hole was put there, but I also hate that over the years, I have allowed it to grow and consume me.

So for now, I shall cruise a long and hope that I am able to stay afloat. And that the next surgery is the one that works. The one that gives me my life back, instead of adding more problems.

Memories

With my chest playing up at the minute, past memories have been haunting me this week, perhaps making me more nervous.

It was 2 years ago and I had been in and out of hospital with my breathing and had a string of respiratory arrests behind me. My surgeon was going out of town for a week and so the week before he took me in for yet another clear out. I had a stent in at the time as my airway would not hold open. He had been trying to talk me around to have a trachestomy in, but I was still filled with scary memories of ICU years previous and had refused.
Things were getting tougher, to the point that on college days, I would get up at 6, so I had time to get dressed and run treatmeants and leave by 8:30. Every 2 hours when lessons changed, I would spend 30 mins running nebs and an hour at lunch time. But I was getting through the day and that was all I cared about.

But my airway was still complaining. It got to the point, where I couldnt get around the house without near passing out.

I had emailed my surgeon and asked to talk to him as soon as he got back from his trip as as much as I didnt want them to, I knew things would need to change.

Wednesday, halfway through his week off and I was really struggling and so the ward admitted. The SHO was an arrogant twat who basically gave the impression that I was wasting peoples time, because I kept coming in. All they could do was run nebs and give me steroids, which I could be doing at home.

I had prebooked ticket to see the premier of New Moon with a friend for the midnight showing and I was desperate to go see it. So when they decided to discharge me on the Thursday, I just went with it.

I was exhausted and even borrowed a wheelchair as I couldnt make the 10 steps from car to cinema. The film was wonderful, but throughout, I was concentrating hard on my breathing, and not just at the topless scenes.

My friend took me home and saw me to bed where I slept a broken sleep. Mum was in work the next day till 12 and I was home alone. I awoke struggling, but managed to get my neb on and after about 20 minutes was settled a little. I was so exhausted that I fell back asleep, to do the same thing only 20 minutes later.

At one point, I knew mum was due home soon, so I bundled up my neb, and curled up on the floor in the living room, remembering to unlatch the front door on the way past. My reasoning? I could hardly stay awake and if my throat went again I didnt want an ambulance crew having to deal with stairs, as I am not exactly light.

Mum came home and imediatly told me off for not phoning her, but I didnt want anyone to worry. At that point, I was fairly ok and although still struggling I was managing. I explained that I didnt want to have to face that annoying SHO again and so I didnt want to go to hospital. I soon fell asleep again and mum must have dozed off next to me. Next thing I know she is shaking me awake and running the neb for me, apparently, I sounded like I was dying.

The ward said to come straight over and within minutes, I was on oxygen and sat in the bed closest to the nursing station. The on call doc had been called, but it was a busy day and it took a while for him to come. He increased all my meds and asked for an ICU doctor to review as he was unsure about leaving me on the ward. At this point, the SHO was on hand over and said it wont be nescary etc but the ICU doc had already been called.

He quizzed me on my history and took some blood gasses. At this point I was settled so I had sent mum and dad home as they were exhausted and there was nothing they could do.

Once the gases were done, the ICU doc decided he wasnt happy for me to stay on the ward as he would prefare more intensive monitoring and so I was shipped off to ICU. I had never been moved to ICU while awake, it was most odd and all I could think to do was apologize for all the fuss I was causing, and of course to run the loo before they shipped me down there. Of course, even moving down there was a job, as I had to be acompanied by a team of 2 docs and a load of equipment. It was very overwhelming.

That night may have started late, but it was a long one. My nurse was wonderful. She dimmed all the lights down for me and sat outside the door so she could still see the screens but so I had some personal space. But the night continue as the day had, in that every time I went to sleep, I would suddenly wake up unable to breathe.

By morning handover, we had gotten into a pattern of me being able to get 10 mins sleep and then topping up the nebs and so, I had avoided any scary situations. The new nurse coming on, was a little more relaxed and started talking to me about breakfast.

And then, while in mid conversation, I coughed. And thats when things got scary.

Suddenly, I couldnt breathe. I looked at the nurse, with fear in my eyes and tried to tell her, but the words would not come out.I tried coughing to clear it, but I could not get the air in to cough. I remember watching the nurses expresion suddenly change as she began shouting for help, about 6 seconds before the machine began to alarm.

The sudden movement on an otherwise peaceful sleepy ward was intense. within a minute, there were doctors everywhere and the crash trolley was being bought in. The ends where pulled off the bed and a doctor began to check my cannula was still working. Typically it wasnt, and the doctor swore loudly, before tipping a bottle of iodiene up my arm and bed to attempt to put another one in.

Every breath was fight. The anesthist was leaning over me from behind, ready to take my breathing over. The injections to paralse me where ready in another doctors hand on one side of me and another doctor was talking me through breathing. Everybody else was starting at the moniter was my oxygen sats dropped and dropped.

Slowly, the steroids they had pushed through began to work and my oxygen levels began to stablise and then slowly began to rise.

After about 40 minutes, the staff began to drizzle out and the crash trolley was wheeled back out into the hall.

Mum and dad had apprently been trying to phone, but had not got any answer (oops) so had just popped over to see how I was. They were allowed in to see me and I told them what had happened, well a watered down version.

That was one of the scariest moments of my life. The drugs and fighting and I knew that last time, it had been a close call, as they can not get a normal size tube down my throat, I have the have the same size tube that a toddler would have.

Mum had been with me about an hour and was asking if I wanted anything from the shops. It was Saturday and she usually went shopping. But for the second time that day, disastour struck. Exactly the same as in the morning, my throat suddenly shut down. This time the docs knew what to do,my parents however were not prepared and I am glad that I was not in the waiting room when they had to leave the ICU.

Things once again got under control, but by this point we knew something had to change and change fast. My surgeon, who was far away, was phoned several times that Saturday morning, whilst they tried to asses the situation. Another surgeon was called in as an emergency and although he did not know my case, he agreed to come in and see if he could help. The emergency theater team where put together and I said good bye to my parents, not really knowing what would happen next.

This time, I needed a bigger team and the transfer from ICU to theater, was done with at least 6 staff members and a lot of equipment.

The doc removed as much as he could out of my airway, knowing that he could not take to much as my whole airway would collapse.

I woke 2 hours later in the ICU aching more than I had ached in a long time. I needed high flow oxygen to keep my levels up, my blood gasses where everywhere, but that could be dealt with. Every time I breathed, you could hear a deep rattling noise. Tissue had been removed and I could breathe, but every time I did, it aggravated the area and so the area swelled.

I hadnt slept in two day and every muscle in my body felt like it were on fire. Every breathe felt like it would be my last. I hate bedpans and commodes, but I could not get out of bed and so the discussion began to insert a catherter. I hate those as well, but at that point, I felt so beaten that I was about to agree.

Mum and dad sat by my side, holding my hand and willing me to try and sleep. But I couldnt, I kept thinking, if I sleep, I will stop breathing again,my body will give up. The ICU docs came to see how I was doing and I literally begged them, with tears running down my face, to sedate me and put me back on the vent. I was to tired to keep breathing. They want me to keep going, but promised to review me every hour. They were afraid to knock me out and not know how my throat was. That the tube would further irritate my throat and cause more swelling that they could not get passed. If this happened, even a trachestomy would be out of the question due to its placement.

That was one of the longest evening I have ever experienced. I watched the second hand on the clock as sweat poured down my forehead from the effort. The tears eventually dried up and I resigned myself to what would be.

Slowly the seconds added to minutes and then to hours and I began to get some rest in short 10 minute bursts.

Again, the staff were wonderful. Encouraging me every step. Trying everything they could. I needed a more permanent IV line putting in, but even the best doctors could not get a PICC line in my arm as the viens were ruined.

That weekend lead to a lot of tears, from myself, my family and the staff. The theater nurses made jokes about what I was going to wear to the staff Christmas party as I spent as much time in there as the staff did. I had a few more close calls and several more trips to theater while my surgeon tried desperately to get hold of my ENT surgeon, who had just vanished.

In the end, I spent almost 3 weeks in the ICU, developed a very bad infection in my blood that was only picked up by chance before it did damage. I got my first trachestomy and learnt how to care for it myself. Developed an infected line that came pretty close to killing me once again and became a good teaching tool for the ward staff.

I was admitted in November and I was discharged in February.

That first weekend though, is one that haunts me most. The sound of all the docs, the pain of my ribs, the fear in that nurses eyes. I can see it all as clear as yesterday. At the start I needed my throat clearing every 4 weeks, that then dropped to every 2 weeks and in the end, I was needing it cleared every day. I think that is why I am so on edge now. I dont want to end up back in that position. I dont want to fight for every breathe, I just want to be able to breathe. But, I know I can cut myself some slack on the occasions that I do freak out, as they are founded on true ground.

Onwards

Its strange to think back, that a year ago, I got my trach out. I was literally jumping for joy in the hospital, crying because I could breathe and all the possibilities that I dreamt had opened up for me once again. I was grateful, I truly was. But my body decided that was not the way it wanted to go.

So a year later and over 14 more surgical procedures, I am where I am. In the same place I was almost 2 years ago. No better at breathing and needing constant treatment to stay well. The treatment no longer makes me feel better, but I have to keep up with it to prevent myself from getting worse.

This months treatment has hit me hard. I am sluggish, baearly staying awake. And truthfully, I am scared. I assume I have an infection, but coughing literally terrifies me. I have to pause and gasp for breath whilst my head goes fuzzy and I try not to pass out. I am finding it hard. People need me at the moment, I need to be there, not hiding in the corner dreading the next cough. My muscles hurt, my lungs hurt and I generally feel like crap.

I knew getting well was going to be a hard task, but what is becoming more obvious right now, is that things are going to get a heck of a lot worse before they get better. If there is going to be a treatment that will help, we Can I continue this decline for years? I feel useless. Mum is ill and I can hardly function, let alone help her. Im losing my place and my health fast. And today, it seems that tears want to spill.

I had to go the shop for milk. Drove there, parked in the disabled bay close to the door and went for milk. Half way there, I was hit with exhaustion. I wanted to sit on the floor and scream like a child. I cant continue on this decline, I just cant.

In a million differnt ways, I have made peace with myself. I still believe in fairy tales and happy endings, but I am ready to go if my time were up. But in a million and one other ways, Im not ready. There is so much I want to see and do and be part of, to know the out come.

I feel crap and I hate it,but I hate even more to know that things have to get worse before they can get better.

honesty

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

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

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

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

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

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

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

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

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

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

Its hard.

Just keep swimming

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Final destination, going insane and a new diagnosis

Why is my mind never simple? Why do things not make sense. Its kinda of like looking at an optical illusion, perhaps I am too close to it all to actually see what it is.

Do you remember seeing that film Final Destination years ago? (Spoilers follow, but hey its an old movie) Basically, these kids 'dodged' death, but death kept trying to come back and get them anyway. It feels kind of like that sometimes.

I'm not making much sense.
Basically, since THE incident, things have not been right with me in one way or another. Ok, to a point that would be expected, but anyone would have suspected the Liver to be the main cause of problems. When my breathing began to become an issue, I was passed around a lot so to speak. Breathing tests, that showed something, but could not be pinpointed. Constant infections and difficulty clearing my chest, hence why it actually took me so long to get out of ICU in the first place. At first they put the infections down to the anti rejection meds, but as the doses of them lowered, I was still just as susceptible.

Then they decided to blame having had a thoracotomy, with parts of my lung removed as well as closing up of the diagragm. Not to mention the previous ARDS. But why the wheeze and the stridor? So then they decided to go with Asthma, but the medication didnt help. It was then I was referred to the ENT.

Now, bear in mind, this isnt over a couple of weeks, were talking years to get to this point, with jumps from one thing to the next. ENT gave me the diagnosis of Tracheal Stenosis. After not getting any relief from the surgeries they tried, They decided that my problem was to far down for them and that I in fact needed a Thoracic surgeon, not a respiratory doc or an ENT.

So I saw the Thoracic, and they tried to help, but all they could come up with was stents, which caused more problems, so we mutually decided to give up and see how it went for a while. I was still noisy and out of breath a lot, but I was fed up of being a patient and was in the midst of training in Nursing.

A couple of years later, my breathing was getting more labored and I was still getting frequent chest infections. But my main issue, was that, the stuff on my chest, was so thick, that I would often cough and virtually choke on it, having to guzzle down large amounts of water, just so I could get air in again. My GP sent me back to the ENT, who then decided to team up with the Thoracic and have another look. Then this whole ordeal began with the collapsed trachea and so on.

Jump forward to now. I have had 'radical' surgery to fix my trachea, yet I am still having issues. My new ENT says that my trachea is getting better, but I am still struggling and I dont know why.

So, I had a follow up on Tuesday morning with the respiratory docs from my last Pneumonia bout. I asked lots of questions, but the doctor, was reluctant to go very far with me. In his view, he can order the tests to find out about my breathing, but it will only show what we already know, that I have a narrow trachea. He said, that I spend a lot of time with health care professionals and he dosnt want to step on any toes so to speak. He flicked through some of my previous tests, and found a CT from 2009. He said, that he thought he could see some signs of bronchiectasis. This is when the bronchus collapse. He then discharged me as he felt there was nothing more he could do and I am under a lot of other people anyway.

So, I of course come how and investigate bronchiectasis. It causes:

The most common symptom is coughing up phlegm, often in large amounts, every day. This is very tiring and many people find it embarrassing. Even taking this into account, people often feel very tired and have a lack of concentration.

80 per cent of people with bronchiectasis also have wheezy shortness of breath.

Hmm, sounds familiar.

So, I wanted to email my ENT surgeon anyway, as I could not put into words, how I was feeling when I saw him on Monday. He was hopeful on Monday, that things are settling down and that the time between surgeries will get longer. Which is great, it really is, but what I wanted to know, is would my breathing also improve during this time? At the moment, at best, I can still get out of breath just pottering around the house and I am exhausted all the time.

I dont think that I got a clear answer on this, but he did mention in reply to me, that if I felt that I was still severely limited, then perhaps another open procedure (but smaller than last time) would help. Or perhaps trying a stent again. Now Stents scare the hell out of me. I have had one respiratory arrest and far to many close calls due to them. Respiratory arrests are scary as hell, especially when people around you dont believe that you cant breathe, as your o2 sats are fine, till they come back and realize your thrashing around the room with not a clue on whats going on due to CO2 build up.

But the surgeon promises me, that there are more types of stent that my airway my like more. And I am not sure on the open procedure.

But then, my mind still races to, is it the trachea? Is it the thoracotmoy? is it the bronchiectasis? Is it something else all together? Ok, I know that my breathing isnt dire so to speak, but considering all the docs keep saying that my breathing should be fine, it isnt. Perhaps I am unfit, but I dont think I ever got my fitness back after transplant. Surly that would have happened?

You see, I worry that doctors are not listening to me, that perhaps they dont believe me, when I say my breathing is really getting the better of me. But then, I stress the point and they listen and make a suggestion. So what do I do then? I worry that I am exaggerating, that perhaps I expect to much.

I dont know. I have never made anything up medically wise, yet it is always a fear of mine that I wont be believed. But, I was promised to have the breathing of an average person my age, which I dont have. So my mind comes back to why.

Argh. I need someone to take over. I need someone who will look at the whole picture. Someone who knows exactly what is wrong and why and how to fix it. I need someone who is 100%. I need to stop trying to be the doctor and I need to stop trying to diagnoses myself. But then, if I had stopped trying to find the cause a year ago, I would still be trached right now with no voice.

It just drives my head to distraction. It goes round and round and I lose myself in theories and explanations. I pin my hopes on a diagnosis in hopes that a cure will follow. Then something else comes up and I am lost again.

And its driving me insane. I need to hand over my medical care, but to who, and what becomes then?

Hospital common sense?

Yes, I was having an early night tonight, but found I had loads of catching up to do so oops. Still not fully caught up, but perhaps enough for tonight after this entrance.

Though, were to start.
I guess, I am starting to cope a little better with my bitter periods. Things get annoying and I feel like sometimes, I am in this no mans land. (More about that shortly) I often want to sugar coat things, not post when I feel crap and just post the uplifting insights. But that was never the intent of this blog, and I find that trying to hide my bitter periods, does tend to make them worse. Though, I think perhaps, things mentally, are starting to break down slightly. For now I will keep an eye on it, but all these little niggling things, such as pseudo hallucinations and server mood swings are warning signs. But for now, they can take a back seat, along with my paranoia.

So, on to the joys of hospital common sense. It is true what they say, common sense really isnt that common anymore, and especially not in a hospital setting. They had me down as one of the last on the theatre list on Monday, but after me, being determined to be classed as fit for travel by early evening, they played around with the list and put me first instead. I must say, it is nice how they are so accommodating for things like this and I do truly appreciate it.

So, by afternoon, the painkillers from theatre are wearing off and I want to stay on top of the pain before it all builds up. From experience, I knew that I needed something stronger than paracetamol at this time, so I asked the nurse if I could get some. After looking at my drug card, she says, well your written up for OraMorph, I will just get it. Now, I was hoping to be leaving the hospital within the next couple of hours, to commute the 250 miles home, via bus, train and car as well as stopping for food and keeping fluids up. Oramorph would have just knocked me out and made getting home so much harder. So, I asked if I could have something in between the two. Again, looked at my drug card and said, oh well, once your meds to take home come in, you are prescribed co drydamol and co codamol, so I guess once your discharged you can take them, but I cant give them to you as there only to take home. Gah! As a result, I took the paracetamol and as predicted, within 40 mins, I was getting to the point of pain that stopped me from drinking and made everything worse.

So the next common sense thing, I always ask for normal tablets to take home as I hate soluble and given the volume of tablets I have to take anyway, soluble dont make any difference, apart from being awkward to manage when out and about (i.e, traveling home) So when I got my meds to take out, they gave me soluble painkillers, which ok, granted, they are for throat pain, but then, is a big box of anti biotic, which are bloody huge ha. I guess it just makes me laugh.

Antibiotic

Tonights cocktail of 18 pills

I should write about Mondays surgery, but right now, meds are kicking in so I think now is a good time to sleep.
Though, if anyone has any tips to stop the bottom of your nose getting sore when there is something rubbing on it, they would be greatly recieved. I am wearing my humdifer at night, and its a little like nasal specs, but  bigger and harder, to allow a thicker airflow through (Its set on 45L/Min at present)

Huge nose forks (eew)

questions

I keep meaning to come write here, but I think, perhaps my mind, is trying to dodge facing up to this next step. Asking questions that I am not sure if I want to know the answer to. I do however need to know, and the time to contemplate my next move is running out.

Monday, I am booked in for my next surgery. Its only a maintenance one and the same as the last few, but with my main surgeon. What came up last time, was the prospect of cutting part of my vocal cords. I need to figure out if I this is something that I am going to agree with.

I guess the main question to ask, is going to be, what the main goal is now? Living day to day with this, with a condition that changes so drastically, I think alters your perception. 20 months ago, when this whole ordeal restarted, the aim, was to improve my breathing, to a point where it would be classed as mostly normal against others my age. When my whole trachea collapsed and I had the trach, my aim was to be able to breathe properly with that and have a full voice. When that didnt work, I contacted London.

The big surgery I had there, was aimed to give me back normal breathing capacity for a person my age. So far that hasnt worked. I dont know if this is still the aim still stand. You see when you live around things with such restriction, you change your goals. Yes it would be lovely to have 'normal' breathing, but at present, I would be just as happy to have enough breathing to get by on a sedate lifestyle.

So, on Monday, when they ask how I am, I am likely to respond with good, as my breathing has not gotten as bad as it did last time and so I have been able to survive, though I have been extremely tired. However, then I have to remind myself, that as of yet, I am still walking slow as my breathing can not keep up with fast walking and stairs still kill me. Just walking the length of the kitchen, is enough to put me out of breathe. So it is not normal breathing.

In relation to the vocal cords. I think that I need to ask, is there still a chance that my breathing is going to improve without touching the vocal cords? For example, if my throat is still healing, once it healed, will my breathing get better? If so, perhaps it would be wisest to wait this out.

If he is not sure, then I need to know, is the breathing issue, defiantly related to my throat, and not some other random condition that we maybe missing, such as my lung surgery or constant infections. I mean, we already know that I have an issue with having way too much gunky on my chest, though we dont know why. So who knows.

If the shortness of breath is now mainly down to the vocal cords, and not likely to alter unless surgery is performed on them, then, I dont see much point in postponing cutting them. If, I have even the slightest chance of being able to breathe close to normal, then I think that I have to take that chance. Yes, I would miss my voice, but it should only be changed, not killed (fingers crossed)

And not to be the eternal pessimistic, I also should ask, what are my options if the do touch my vocal cords and it still dosnt help.

So that 4 questions right?
Main goal? (survive or normal)
Is breathing likely to improve if left alone?
Is breathing def related to trachea?
Are there options if vocal cord surgery dosnt work?
Ok, all dully noted.

Sorted, roll on Monday.

Oh, I also have my new machine, but we will cover that another day.

Moving on

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

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

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

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

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

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

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

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

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

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

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

Projects

This week so far has been good. Dad has gone back to work after being off for the holidays and because everyone is settling back to normal, they are all tired. This means that, a lot of afternoons are now spent at home, while the parents gently nap in front of the tv, I am able to sit and do things, which is a heck of a lot easier than being out and moving.

My room at present is like a little creativity thing, I have so may projects that I want to do, but I cant seem to stick at just one, so I do buts here and there and play around. But its good, its keeping my mind and hands busy.

Last summer, I began working on a circle skirt that I wanted to make. I cut it all out, though I made a few mistakes and got hald way through pinning it. Since then, it has kinda sat in my wardrobe. I was really struggling to use Mums sewing machine. Its older than me and is a big heavy thing, which made it diffcult to get out and put away, not to mention, it was hard to thread up and such. So for christmas my parents bought me a new machine, a smaller lighter machine, that does nearly everything mums machine does. Well I finally finished that skirt from last summer.

ok, its not perfect, but for a first try, I am pretty happy with it. Its lovely and cool and in the summer, I can wear it inthe garden and such or even put a petticoat under it and have it as a stick out skirt.

I had also promised a friend a sock monkey for christmas,but ran out of time, so I was able to finally get this finished.

I have since made an Elepant, but I am going to redo him a little to make him into a door stop.

I am currently working on two different canvas pieces. The first one, I want to draw on, possibly with a quote and then embroider it, no idea if it will work or if the canvas will just rip. And the second one is that I am having a go a photo onto canvas.

Today, I treated myself to a embossing machine, which takes really pretty paper, though now I keep looking at new plates for it, so many designs to chose from. Shame no one had a birthday coming up.

As for breathing, it feels better and I am managing to sleep of a night, however, it takes me a long time to wake up of a morning. From my alarm going off, to actually being able to get downstairs, is probably about an hour. I tried to speed it up today and be dressed and ready to go out in an hour and 20 mins, but I felt very rough and could not stop shaking. Breathing I can do fine as long as I am sitting, if I walk slow, I get a little out of breath, but if I need to walk fast, I pant. I am also struggling now to carry a handbag with me, the weight of it feels like it is dragging my chest to the floor.

After a while, I find myself getting air hunger, just feeling like I am breathing the right amount, but not getting the right amount, kinda like I want to take a deep breath, but its not coming naturally. Still had no appointment through from London, have to chase it up tomorrow possibly. We shall take things one day at a time and see how things go.

Medical prettyness

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

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

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

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

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

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


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

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

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

But this is the bit that is observed more often.

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

I do like medical stuff.

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.

rattle

I want to apologies for last nights post, I was having a  bad night. Yes they do seem to be occurring more often, but for now they are controllable and I hope you dont think any less of me. I guess, I am just getting tired of all the uncertainty and not being where I want to be or achieving the goals I set.

Things are getting difficult again in the breathing category. I dont know, its odd, is it because I know I am going in next week that things suddenly get worse? or is it because before christmas I needed to make my throat last so as to get through christmas out of hospital, so I did less, I was out and about less and rested more. Now that I know that I am going in, I am doing things daily, I am being active. Sure I sleep for like 12 hours of a night, but I am out most days.

Today, was a particularly hard day. I awoke with a major headache, never a good sign. Breathing was hard, like there was a permeant resistance there. I am trying to think how to describe it. I guess it is kinda like blowing up a ballon, but to a lesser extent. The hardest part is gettin the air out. Yawing becomes a real problem, as when I yawn, I then tend to have a long yawn, then breathe out quick and take a big breath back in. At the moment, after a yawn, I cant get the breathe out, so by the time I do I have to breathe in again quick.

I spent the day working on some dreaded paper work, which I still have not finished, so hardly moved around. I got up at 12. At 6 I had my tea and promptly fell asleep on the couch for 2 hours. I woke myself with the noise I was making, it was a very loud rattle. Even my mum was laughing at my 'snoring'

So that was it, exhaustion even from doing nothing. Though, I am now finding that by evening, my breathing feels better, but maybe thats because I dont potter around at this time of night.

Roll on Monday.

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.

January

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!

Februrary

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.

March

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)

April

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.

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.

June

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.

July

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.

August

finding things

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.

September

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.

News article

Waiting To Exhale

 October

Normal

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

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

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

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

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

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

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

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

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

November

Halloween

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.

December

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.

Present

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.