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.

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.

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.

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.