shrinking

My world feels as if it is getting smaller once again.
I guess in so many ways it is.

Last week, I began to live outside my room. Ventures to the local pub, trips to the shop and visions of future. Thoughts of family, housing, uni and work were exciting me. Possbilities were endless and the world was just a breath away.

This week, I feel lazy in a way. My world has shrunk to the size of my room. One little square room, with a bathroom at the side. And even that is beyond my stretch for a large part of the time.

They took the stent out of my throat last Tuesday. All looked well but they wanted me to stay in for monitoring. Today things have gotten harder. A lot harder. I have slept a lot the last few days, but today, I tried pushing myself. A shower, nearly wiped me out. I almost had to crawl to get out of the bathroom.

finding myself, sat on the floor of shower, gulping at the air like a fish out of water, tears sliding down my face, but I dare not cry, for that takes more oxygen. But its not enough evidence for me. I push myself further. A slow walk to the shop I convinced myself was a good idea. For it would be a measure against how I was just a few short days ago. Pain wasnt how I imagined it.

So I sleep through the night and right through the day. Stay awake for the evening, but as tiredness kicks in breathing becomes more noticeable. I can cope with breathless on movement, I can deal with that without to much fear. But as breathless on sitting becomes a thing, then my calm begins to fall.

My body tries to keep up. Keep everything stable, but the numbers soon show the strain on my heart. A pulse of 130 should only be seen during heavy exercise, never mind lying on my bed watching tv for 2 hours.

And yet, part me worries. What if they say its me, what if I am unfit, what if I have missed something. I fear that they will send me home. No I more so fear that they wont listen to me. I try to reassure myself, that they must listen, the numbers speak for themselves.

But then, we head towards harder ground. I have rid of my trach. I said never again, no matter what. And yet, I am have been here now for over a month. I miss my home comforts. Simple things, watching mum cook the tea. Talking to my tortoises, hugging my niece. Joking with my Dad, sitting in the sun. Home cooked food, roast dinners and real chips.

When will I see home again? And if the only way to see it, is with a trach, then where does my resolve lie?
I always knew this was going to be a tough surgery. I guess now is proving just how tough.

But onwards, always onwards. For tomorrow is a brand new day and I have no idea how that will go.

all good things come to an end.

Ive barley been on the computer compared with my norm.

Ive had a friend over and its been a good but busy weekend. Need to recover now (lol) There will be more about this later.

Im just tired tonight. Its been one of those long days that you just wish would hurry up and be over with.

It was my sisters birthday so we were going to go out for a meal. We were discussing how to arrange things best and I suggested a couple of things, but nothing was decided. Then they decided that they were going to a certain resturant and I mentioned something about how many tokens they needed. With that I got my head bitten off. That all the plans need to be changed yet again as i wasnt doing what I said I would do. (Yeah, I would be doing it if you just told me what the hell it was supposed to be) Anyway, they got pissy and stormed out.

So I deduced that I was supposed to pick my niece and nephew up from school and wait at my sisters house with them. So I am sat in the car, in the car park, waiting for the youngest to finish and talking to the eldest. We had the windows open because it was hot and we were just talking. The guy in the next car kept shouting his head off at his kids and was beginning to really annoy me. Then he looks over and shouts oi, whats that you got in your neck?! (Yeah I did have my scarf on but it was lose as I was in my own car minding my own bussiness) I sort of shook my head and shrugged, thinking perhaps I had imagined it. So he shouts again. I just glanced over to him and mumbled something about it being a medical device and turned back. I felt so embarrassed about it. I know I shouldnt, and I also know that he as an adult should have had a bit more tact, but I just wanted the ground to open up and swallow me whole right there and then.

I made a cake for my sisters birthday, it was in the shape of hello kitty.

She seemed to like it.

I was talking to her later on, once my parents had gone home. Apprently mum told my eldest niece that I might have a nark on when I got there. (I have no idea why, when it was them getting pissy) and she told my sister that I had been out all weekend and had no meals at home at all. (I mean how dare I have any kind of social life for one weekend at the age of 24? Shocking isnt it) ha heres me thinking she would be pleased I was getting out, but of course, mother dosnt do pleased. Its so annoying. I know I need to keep doing things like this to get her used to it, but its been like this since I was young. I just give up on socializing and getting out because its just not worth the effort and the after effects that I get off my mum. It used to be the same with going to my sisters. I eventually stopped going as the time away wasnt worth the hassel and abuse I got when I got home. Its stupid, im an adult, I shouldnt be in fear of my parents.

Oh and even after asking mum not to say anything to my sister about me getting in touch with my other sister, mum starts talking casully about it in front of my sister, so I assume she told her then. (gee thanks)

So as a result of dad getting angry with me, the flashbacks have been on the edges of my vision all night. The blades sitting on my bedside table shouting out to me and a box of pills on my bed. It would be so easy to just destruct at this point. But its not worth it. I have the nurse out tomorrow so any damage would be picked up pretty quick. blah. But there is always tomorrow.

Oh and I am fully expecting at least one parent to kick off on me tomorrow, probably for not getting in till 10pm tonight (shock horror!) as they were in bed when I got home. But I dont care, it just gives me more fuel for my fire at this point.

Screw it

two steps forward, one step back.

Or is that one step forward and two back. *shrugs*

So, im beginning to get a little bit excited at the prospect of Monday. Tickets are booked. Train leaves town at 9:48am and gets into London at 12. (cost bloody £52 each though stupid train) Then coming back we leave london (Euston. Never been that station before)  at 9pm and get home at 11:30pm. (that was only £10 for 2 tickets yay)

The appointment is 2:40 I think (need to check that) and the nearest station is kinds cross and then a short walk. hmm what to do with all the other time. Obviously get food, but where. hmm might take my mum to Covent Garden after the appointment to get some tea and a nose around the shops. Ill have to have a think and plan somewhere on route for dinner. eeps I cant wait.

Then comes the descsion. Take my small crappy handheld camera or my big proper camera. I have to take all my meds in there original boxes so I suppose I am going to have to do with a back pack so might as well take my big one. Meds are going to take up enough space, wonder if I can be a real tourist and take my tripod too.

Anyway, thats my positive bit.

So my surgeon said he would send me a copy of the refferal let that he wrote so that I could chase it up. Well, I got this today and me being me, I was egar to open it and read all the gory details. I have this thing when I like to compare to others, suppose its in a way of recognizing that Im not actually lying. I have this huge fear of going to the doctors with something and them telling me I am lying about it and they dont believe me. Even after having a transplant, I was scared my doc wouldnt believe that I had needed it.

So anyway, I was reading it and found it intresting to hear about the different sizes of stenosis I have had and the types of stents they have tried. I was happily reading it until I reached:

This patient has difficult venous access due to server cushings syndrome and obesity.

Ok, so I knew I had bad access asI had to virtually always have hickman or central lines in but was told it was due to my veins being accessed so much that they had collapsed. And of course I knew I was obese. But I had no idea about cushings. Why wasnt it mentioned. I knew the very basics about it, that it causes psych problems and is basically to much cortisol (a steroid) in the blood and that it is a very rare disease.

A quick look on google tells me that it can cause weight gain, tiredness, osteoporosis, and server mood swings that can often present as a nervous breakdown. So is this what is causing my depression? Could this be why I couldnt cope a while back and ended up an a psych ward? Is this why I sleep all the time and have no energy? Could it all be down to this disorder?

So I looked at causes, which kinda unnerved me. The main causes are tumors, either cancerous or begnine, well I know my anti rejection meds can make me more prone to cancers, but I thought the main types where ovarian, cervical and skin, but my mind is in overdrive.

So I go on to read a little more. First they have to find the cause EG: where the tumor is, its most likely on the pitutry gland, which is in your skull. It is often removed, by drilling into your skull through your nose or gums and remove the tumor.It maybe nesscary to have a skin graft after the op. You may also require chemo or radio therapy. Plus you may also need steroids for life.

Tablets for life I can deal with, god knows im on enough of them already. But all the other treatments? Could I really handle them? Would I really need them? The way he wrote server cushings, kinda makes me think that I will need treatment. But I still have to question why I wasnt told about it? And how they found out I have it. The only way I can think of would either be bloods or a 24 hour urine last time I was sedated in ICU.

I dont know, I have so many questions about it and no one I can really ask any time in the immediate future. So my head will just keep exploring the possibilities and looking for correlations.

I just really hope it dosnt interffer with this appointment on Monday. You know, if they turn around and say, oh get that sorted and then come back to us, I'm not sure what I would feel then. Suppose only time will tell.

I have just had 3 hours of uninterrupted day sleep in my own bed in my own room *sigh* ah bliss.
Unfortunately, no I am not home just yet but have been granted a few hours off the ward each day to start adjusting to being out and about again and to see if I find any problems. But anyone who knows me knows how much I love day sleep.

Yeah, so my weekend, not what I planned but yeh.
Started off on friday my doctor told me I could go out for a few hours each day between my meds. He cant send me home yet as I dont have the equipment, but thought it would be a good way of breaking my time up and such. So Saturday morning, right after 10am meds, I left the hospital for the first time in 15 days. Went home and saw my tortoise and had a good snuggle with them. Man I have missed them. Forgot how cute the baby one is when he sits in your hand and stretches his head out to rest on your thumb.

I decided that I didnt really want to stay indoors as I was fed up of being stuck inside, but as I was getting pretty heavily out of breath just walking around the house, I wouldnt be up to much walking. So we went to a supermarket where I was able to lend a wheelchair. By the time we clipped the trolley on the front it felt like an armoured tank, but at least I was out. I kept a scarf around my neck covering my trach and so got some funny looks as I hardly look in need of a wheelchair.

Navigating around the shop was pretty hard, but it was nice to be able to pick my own magazines, drinks, junk food. Right at the end of the shop, we walked in to Sid, my college tutor. He asked how I was and said I was looking well and such. Was a bit awkward. I have never ever walked into him outside college and my first few hours out the hospital and I do, how typical.

So went home and had tea and went back to the hospital, absolutely shattered. I basically curled up and slept for 3 hours, waking around 8. Had a shower and a sandwich and gossip online with some friends and went back to sleep again.

Sunday, got up and ready to leave the ward again at 10. Mum picked me up and we went home. We were waiting for my dad to get up from his night shift and then we were going to go surprise my sister by visiting her new house and have a bit of dinner on the way home.

I had only been in ours for about 30 mins when I got a killer headache and started aching all over. Soon I was throwing up and virtually crying in pain from my head and my joints. I couldnt stop shivering and had two jumpers and a blanket on. They bought me back to the hospital.

My obs where taken and my pulse was high as was my temp. I still couldnt stop throwing up even though I had eaten very little. Its really hard to trow up with a trachy as you get out of breath so easy. They called the doc to examine me and gave me some anti sickness. He couldnt find anything wrong as my chest and everything sounded clear. So he ran bloods (Thank god for my hickman line). He wanted to draw normal blood too but he knew what my veins were like as he had been asked to cannulate me a few times when he was on nights and my cannulers kept failing. He had a look and alittle poke but gave up. Said that if the bloods showed wrong results or anything he would come back for another go.

So I spent all of Sunday sleeping and throwing up. By tea time I was starting to feel better, though I still had a temp, but I was able to keep fluid down again so mum bought me some food in, which also stayed down.

Slept right through the night but morning obs showed that my temp still hadnt come down, even though I felt cold. Saw my normal doctor again, he was worried about my temp and said I would probably need anti biotics but they where still waiting on cultures.

I slept most of Monday morning, had my dinner and then mum came to collect me. Went home and decided to go for a nap in my own bed.. Didnt think I would sleep for a further 3 hours. Had my tea and came back to the ward again. So that was my weekend. So much sleeping is unbelievable. But tonight my temp is back to normal, my heart rate is back down to where it usually is for me and I feel a hell of a lot better. So hopefully im going to avoid the anti bioitcs and I have just slept whatever it was off.

Mum thinks that perhaps i over did it on Saturday. I dont know. But I felt rough on sunday.

Where also looking into getting me my own wheelchair. Not exactly what I had planned to ask for for christmas, but looks like im going to be needing it. Dreams of jumping on the coach to visit friends in scotland and london are getting further and further away. Plus being in a wheelchair sucks. Not to mention my parents are old, they really cant push me around all the time. My dad has bad arthritis and my mum needs a knee replacement so pushing me around is far from ideal. But I just dont see any other option at the moment. Walking more than 10 steps I get out of breath and its so tiring. It just feels like a huge step backwards. Getting a trachy was supposed to cure me of my breathlessness, but it hasnt and I dont know why or where to go to next. I cant help but think perhaps there is something else wrong with me to make me this way. I havnt had the courage to ask yet.

Onwards we go

Today has been hard.
I am really bad at getting myself off the internet of a night and into bed. It seems once bed time starts ticking round, I remember all kinds that I have to do and as a result dont get to sleep till stupid o'clock. Last night it was about 1am. This would normally be fine, but I knew that i had to be up at 7:15 for college. Still I could cope with that. Except that yet again at 3 I woke up gasping as if my throat was closing. Sleepily sat up and set my nebuliser up and ran that through for about 20 minutes till I could breathe again and went back to sleep. Woke up again at 5:30 once again unable to breathe properly. It does clear pretty easy with a neb, but its the effort of waking up, plugging in the machine (Its on the other side of my double bed) and sitting there while it runs.

So I went to college, first lesson, so less than an hour since I had last ran my nebs. Went to ask a question as I was stuck with my virtual networking server and nothing came out. My voice completely died. This made it really hard to keep up with the lesson. I missed last weeks lesson as I that was when I was having my bronchoscopy so I had work to catch up on. But could I find out what work I needed to catch up on? no not really.

By second lesson, I was ready to go home. My breathing started to feel tight again. Changing classrooms, I stopped at the loo in between so I could sit down and get my breathe back. I managed to make it through all 3 of my lessons, but it was getting harder and harder. I was literally sucking the air into my lungs. It was starting to get scary, at one point I thought I was going to pass out and I couldnt cough anything up as my throat was to dry to shift anything. I started thinking about what would happen if I collapsed in college. I have no idea. None of the tutors are medically trained and I would feel so ashamed if anything like that happened.

Even my tutor comment on my breathing today. He kept asking me through the lesson if I was ok, to which I kept nodding. After the lesson he said told me that I sounded awful and that I should go home and rest. He also said he was proud of the way I was still carrying on with the course and coming in right after being discharged from hospital and stuff.

I slowly walked to my car, which was parked right next to the door. I was sucking in breath as best I could but it felt like my lungs where on fire and I had to sit still in the car for about 15 minutes while I regained my breath enough to drive.

I cant live like this. Its driving me nuts not being able to even walk between rooms. I emailed my surgeon last night. (remember what I said about always remembering around bed time that I had things to do, well it was kinda midnight) Well anyway, he got my email this morning and rang the house phone to speak to me. When he got no answer he started panicking incase I had arrested again. He phoned my mum at work and asked her why I wasnt answering the phone. She rang me to make sure I was ok and stuff.

So I havnt actually spoken to my surgeon, but he basically told mum that there is nothing he can do really as every time he does anything, even a scope, i get worse. He said that if I am really struggling then to phone the ward but he dosnt know what else to suggest. He is also out of the country next week so I need to try and make sure I dont get ill then. Dont think i would trust any of the other surgeons in the hospital as I have always been under the same one. Just have to try to preserver.

It would also appear that the Amlodipine has not started to work yet even after doubling the dose. I had to go for an ECG yesterday morning and my pulse then was 127. Taken the ECG to the doctors so I suppose I will find out the results of that on Thursday evening at my appointment. Also had to go for yet more blood tests, this time a fasting glucose and a hemoglobin. Again, will get the results on Thursday.

Im just so tired of everything at the moment. I have a ton of work to do for uni and I just cant concentrate on it. I wonder if my oxygen levels effect my concentration? Maybe, and I really hate to say this, but I am thinking about get the permeant tracheotomy. I cant live like this unable to move anywhere and feeling like im going to pass out whenever I do move. I really really dont want it. But it would beat being the way I am now. Oh well onwards we go I suppose, just need to try and stay positive. There are so many people who are worse off than me. Least things like my liver function and kidney function tests are all fine so the transplant centre are happy with me even if none of my other teams are. hmm.

Breathing Space

Its been a mad few days. I feel like I have lived on my nebuliser. I havnt slept through a whole night yet without waking because my breathing is so restricted. I cant walk anywhere, even going the bathroom I come back gasping. I tried going shopping in Tescos with mum on Saturday. My throat became so tight that I felt like I had to physically suck air into my lungs, my chest muscles where killing me. Mum could tell I was struggling. She kept asking if I wanted to go and sit in the car. I said no. I couldnt tell her that I didnt want to sit in the car alone incase I went into respiratory arrest again. I was starting to panic, it really did feel like I was going to pass out.

Its really not a nice feeling, struggling for breath all the time. I could manage it when it was only struggling for breath on things like running up the stairs, but half the time Im getting this now just sitting still. It is exhausting me so much that I have been getting up late and still going for an hour nap in the afternoon. Problem is, I still wake up from my nap gasping and having to jump straight on my nebuliser.

Mum said before that I cant live like this and I think she is right. As much as I dont want it, im going to have to look into a permeant Tracheostomy. Just the thought of it makes me want to curl up in a ball and cry. But I think that I have pretty much reached the stage now where things are unbearable. I really dont want to consider having it done. Plus I dont have time now till the summer to have it done. Can I last that long as things are? I have a lot to think about.

I cant keep complaining about this to my surgeon, I already feel like he has had enough of me. I bet he regrets taking my case on. I dont see him again till two weeks on monday. That seems like an awful long way a way to live like this.

Saw my GP on Friday. The amlodipine hasnt even touched my pulse or blood pressure, they where both still very high. She has doubled my dosage now up to the maximum of 10mg. My bloods all came back clear again apart from my white blood cell count. I have to go for an ECG on monday now and I have to have more blood tests to check my hemoglobin and fasting glucose. She is still looking for the cause of my high blood pressure and wants to decrease my effexor dose again next week when i see her.

She started asking me all kinds of questions about if I was self harming and if I was suicidal. Mum was in the room so of course I lied my way through and said no I was fine. She asked when I last harmed and I just said about 3 weeks ago. Which is true as I havnt had the energy to do anything lately.

When we got out the doctors mum said to me, so what happened you got straight out of hospital and started harming again! I just shrugged and said I only did it once. I couldnt tell her I was doing it in the hospital. I think she may have had a heart attack if I did.

I needed a break so I went out with Alison on friday night. We went out for a meal. It was nice. But the topic of conversation soon turned to Peter. And of course in turn that went to Dave and me in hospital an all those other fun subjects. I kinda felt distanced from them all while talking about them and blocked most feelings out. Still not nice though.

back to the ward

Well I did end up in hospital, again!
I was feeling really breathless, so mum said why not go the walk in centre and get your oxygen saturations checked. i agreed to this, thinking if there fine then I have nothing to worry about and if there low, i can go look for treatment.

Well I got there and was taken through to triage and hooked upto the machine. The nurse looked at the numbers and said hang on I will be right back and went to get another nurse to help her. My pulse was 145. They took it mannual and said it was irregular. Listened to my chest to which they said it was clear. They then said they that they wouldnt be happy with me going home. They were going to send me to the royal, but I mentioned that I was on C ward in the cardio hospital. they didnt know how to have me addmitted to there as there is no A&E.

So they rang the ward, who put them thruogh to my consulatants registrar who said he would admit me. 5 minutes later the hospital phoned back and said they had a bed for me. So i go to leave and the staff at the walk in then say there not happy for me to go in my condition with my mum. they wanted to phone an ambulance to take me incase there were any problems on the way down there. After much persuasion I managed to talk them out of it on the condition that I went straight there and used a wheel chair to get from the car to the ward.

So that was me stuck in the ward yet again. didnt get any sleep as i was in the main ward where people where in and out all night. saw my surgeon the next morning and told him what happened. He said he would take me down for another broncoscopy while I was in so he could check everything and then I could go home.

Went down for my bronc at 4 and came back at 5. Asked the nurse if i could still go home that night, she said she doubted it, but could go home early next morning. the surgeon came to the ward to see me and again confirmed that I could go home first thing the next morning. I looked at him and said can I go tonight please. he thought for a moment,t hen said, you do live right opposite the hospital, so I supposse so as long as you come straight back if there are any problems.

So by 8 i was home again. YAY.
Thought i was going to get readdmitted though. Went to sleep about 11 but at 3am, I woke struggeling to breathe. It once again felt like i was breathing thruogh a straw. I couldnt cough as my throat was so sore and dry. I spent about an hour trying to clear it. in the end I decidied that i would plug my nebulizer in give it one go and if it didnt work then I would go wake up my parents an go back the hospital. Luckily, by the time I ran one neb through I was able to cough it clear. Still scary though.

So i have woken up this morning, feeling crap, too hot, too cold, sore throat, headache, aching all over. feel really rough. Suppossed to be going for a blood test on the way home too. Was suppossed to get it yesterday but of course being on the ward meant I couldnt. I just need to sleep, but im in college now. Not that it is doing me any good being in here, I cant concentrate on anything and so im just traweling the web.

In other news Peters trial got adjourned till Janurary. I am considering writting to him if i can, not sure yet. Bloody january though.

Oh well enough moaning for one post.

Panicking that GP

Uni seems to be going okay, although I have a ton of work to do and absolutely no motivation to do it. I have half term next week so Im going to make sure I work on some of the assignments then. I have on assignment due in on the 5th November, which I want finished by the end of half term and I really want to get a good start on Sid assignment. too.

I seem to be getting on better in Uni. I actually talk to all the lads now and even went over to subway with them for dinner on Wednesday. That was hard work, keeping up with them without panting. I made an excuse that I was going the loo and would meet them later so that I could walk a different way only a bit slower.

Was allowed to leave early (3 instead of 4) which was good because I was beginning to rattle again. Mum was putting the tea on when I got in. She was son having a go at me over how lazy I am. I told her im tired all the time and if I go to uni, I dont have the energy to come home and do stuff. To which she told me that I was going to be like this for the foreseeable future so I should just get used to it and stop using it as an excuse to be lazy. Yeah because just knowing that I am going to be like this means I can suddenly do things that I couldnt before I knew i was going to be like this. just urgh. We had a row about how many times i had done the dishes ha. There was only one day i didnt do them, but she claims i hadnt done them all week.

So anyway, 5 came and I had a GP appointment, to which I attended with my mum and a whole list of problems. I needed to check I could still get the flu jab with my current meds as I wasnt sure with being on steroids. I can and so need to book this in soon. I needed to tell her about ditching my psych and ask her to fill the form in for my disabled badge application. I also mentioned that I had a terrible hand tremor that was worse of a morning and that there had been some concerns about my blood pressure and pulse while I was in hospital.

So she checked my bp and then checked again on my other arm and it was high. (190/120, pulse 128) She seemed shocked and read through my notes. She then asked me to wait outside as she wanted to do it again in 30mins to make sure it wasnt a one off or from exertion. I certainly got a long appointment. She was shocked that my BP had been left as high as it was and only let me go home on the condition that I wasnt alone and if I felt ill, I was to go straight to A&E and she would phone me the next day when she had more info.

So today, she rang me and asked me to come back down and see her. She repeated my bp again on both arms, it was the same as yesterday. She had phoned Leeds for my last lot of blood tests from Liver clinic and she had phone Cardio for my last blood results while I was in there. all of them came back clear, however there was no thyroid function in either place so she sent me for a blood test for this and did a whole work up while she was there. She then said she would ring me later and sent me home.

She called about 7 o'clock. Apparently she had been trying to get hold of my surgeon who did my throat surgery to ask why nothing had been done about my BP and to ask his advice on medication. Apparently the heart meds she wants me on can cause breathing problems so she wanted to get his advice. However, he hadnt returned her call. So she asked if I would be ok over the weekend. Again if I felt ill to go straight to A&E. I have an appointment with my surgeon on Monday anyway and she will have the blood results back by then and will see me again in the afternoon. She will probably start me on beta blockers if my thyroid comes back fine.

Oh what joy more meds. She did seem really concerned with how high it was though, which is a little worrying. Why didnt the hospital do anything if it was that bad? Instead of just saying well that must just be your normal. Its not normal and its damaging so yeah. She also wants to stop my psych meds incase these are causing my BP to be high. So im now taking 75mg less of venlafaxine. This will be fun, still depressed yet stopping the anti depressants and my psych dont want to know. hmm we shall see.