Any chance of an extension

urgh why am I so damn tired all the bloody time!
Last night I got about 9 hours sleep with only 2 interruptions. Didnt get up till dinner time. Had my dinner and started drifting off in the chair. A bit later my friend came over and while she was talking to mum I once again fell asleep on the couch, where I remained drifting in and out for about 2 hours. trying to fix my mums computer and I literally couldnt stay sitting up so I left it broke for now. meh job for tomorrow.

But I mean come on, I'm 24, supposed to be in the prime of my life and yet I cant stay awake for more than a couple of hours.

oh well shopping with mother tomorrow. Hopefully more energy so I can walk around. Oh and I must have overdone it on the Wii the other day boxing as I could barley move my legs yesterday.

I wonder if the NHS would pay for an extension on our house? I have way to much stuff to store these days. I took these photos a couple of weeks ago.

This is my supply cupboard with dressings, filters, ties, cavalon, sterile equipment and other fun such things. On top is my home care file, suction catheters and my emergency/tube change box. I have since received another bag full of differnt dressings to add to what I already have so go knows where they are going to go.

My once beloved computer desk with my top spec machine on that I used to use for web design and programming. (That computer hasnt been turned on since October >.<)

This is Sam, by suction machine and of course the mandatory bottle of hand gel.

This is Nessie my Nebulizer (With a rather long cord so I could still do things like getting ready for college of a morning while it was running)

This is my Kit bag that I dont leave the house without. Alco gel, spare tubes, tissues, wipes, saline and filters. fun eh

My 2 weekly med supply (the other 2 weeks gets stored in cupboard whereas these go in the draw next to my bed)

And this (apart from dressings) is what I have to pack if I am going out for a night eg: 24 hours worth of
meds.

So yep, my once geeky room where the main thing was my computer system has now been taken over by med stuff. fun fun fun

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.

Interview, surgeons, doctors and nurses

Such an exciting day.
Started off that I had to get up on a day which is normally a day off, but I cant complain as I am off all week for half term. Had to ring the doctors, who wanted me to come in right away to see a different doctor from the other day. Apparently the one I saw the other day only works Thursday and Fridays. I told them I couldnt as I had an interview to go to and could I make it the afternoon. They said they would ask the doctor if this was ok and get back to me. So there is me waiting to leave and having to hang around waiting for them to call. They said I could come in in the afternoon and made me an appointment.

Drove to college to pick Jay up and we went to our interview. The place is only small and the work they want me to do isn't that hard, but  involves talking to the person who built the machine in the company a lot. Its basically digitalizing a load of drawings to make a instruction manual. Not really computer work, but it will suffice for a placement. I now have to draw a up a proposal and submit it to them.

Then I had to drive to the other end of the city for my appointment with my surgeon. He seems pleased that things hadnt got any worse. I mentioned to him that my GP had been trying to get in touch with him and he went oh yeah, didnt know you where having a problem with your blood pressure. I felt like saying I did tell you several times while I was in that it was high you just said it was nothing to worry about. Anyway, he checked it and it was still high (180/120 Pulse 120). He said it is probably the steroids (prednisone.) He lowered my dose from 20mg to 10mg last week and said to stop it completely next sunday. He will then see me in two weeks and we will see how it is then.

I was absolutely shattered, the walk over to the hospital and back really takes it out of me and I had to stop halfway to get my breath back. So after dinner, even though I didnt have long till my GP appointment I went for a nap. (I love day sleep. 1 hour of day sleep for me is like 5 hours of night sleep)

So got to my GP appointment and told her what the surgeon had said. Apparently he is phoning on Thursday to speak to my regular GP. She said she still wasnt happy to just leave me with high blood pressure and keep checking it to make sure it is the medication. She then checked my blood pressure and it had come down to 150/100 which wasnt too bad. I explained I had only just woke up and such and that it was still high when I had it done in the morning. So she decided to start me on medication for the time being and I am to go back next week and see my regular GP. By that time I should be off the steroids and we can see if my blood pressure has normalized.

She also had my blood results from friday, well most of them, the thyroid ones hadnt come back yet. My white cell count is high and my cholesterol was high at 5.5. She said both of thee could have been due to stress and that they would be repeated next week.

So now I have had more medication added to my many tablets. I am now taking 5mg of the beta blocker amlodipine. Started it tonight so we shall see. While I was in the surgery, the nurse saw me and pulled me in to give me the flu jab. Great I thought, save me coming back, but then she read my file and saw I was on steroids but coming off them. She asked me to wait till next week for it, so I have booked in for the same time as my GP appointment. She also wants me to have the swine flu one. Not sure If im going to get that or not yet. I also need to have the pneumoccoal vaccine. Oh what joy, I will be a human pin cushion.

Im still feeling pretty low an shit to be honest. Having a lot of urges to Self Harm and have absolutely no motivation. Starting to feel suicidal again as well. I know the GP reduced my venlafaxine, but I wouldnt have thought that would have had an effect yet. She told me to lower it on friday. Just hope this is a little phase that will pass.

Going to try and force myself to work on one of my assignments tomorrow. I said ideally I wanted to get two of them out the way with by the end of this week so I had better get cracking on it. Just hope these meds dont make me to tired, I already feel drained.