Friday morning marked 6 months since my last trek to Leeds for Liver clinic, meaning that bright and early, we set off once again. Now the silly person who made my appointment made it for 9:15 am. There is no way, in peak hour traffic I could have made it for that time, as it would have meant leaving at something like 7am and as my dad was taking me and then having to go do a full day in work once we got home, it wasnt fair to make him get up at that time (not to mention me hehe)

Luckily, we know them in Leeds, and they always say, just leave your appointment as it is and get here when you can, as long as its before 12. So we left about 8:45, which is still early for me and so, I curled up as soon as we got in the car and slept, till we hit Leeds. Because it is early, and it is usually a long wait and such, we have a little tradition that we always stop for breakfast on the way in. About 10 mins from the centre of Leeds there is a big Ikea shop with a restaurant. They do a lovely little cheap breakfast (99p nom nom with free drinks) and so I woke once we pulled in there.

Once we were done we headed to the hospital. Clinic was cramped and I kept getting funny looks each time I had a coughing fit. Coughing + a room full of immunosuppressed patients = not a good idea. So instead, I waited in the corridor and mum came and got me when they called me. As a result, when I got into the doctors room, I was out of breathe (Yes it is only about 20 steps between the corridor and the room) The doctor asked me if I had gotten over my chest infection now, to which I asked which one he was referring to. He meant the pneumonia back in October and looked a little worried when I told him I had had several more since then. He took all the info about having been given the wrong antibiotics and such and reviewed the last bloods tests that the GP had sent them. Confirmed that everything was ok and that I was on the right level of meds but couldnt come back down a dose yet (to prevent infection and mind screw ups) but that hopefully, all things well I should be able to drop down back down at my next clinic. I am currently on 3mg twice a day of tacrolimus (prograf)

He then started questioning about my breathing. By this point, I had caught my breath once again, but still struggled to complete an sentence in one breath. He asked why I wasnt on home oxygen and we explained everything. He said that because I was getting reviewed in London on Monday, that he would leave it at that, but if it was delayed for any reason that I was to get a check up at home as he dosnt like the idea of me managing with low oxygen levels as my other organs are temperamental enough. (I have a history of kidney failure and midstage heart failure, that are pretty stable at the moment) He said, that he thinks my heart is already complaining (I currently have a resting pulse of about 115-120 (should be 60-80) and a blood pressure of 140/105) I am on meds to help it, but they seem to not be doing the trick right now. But once again, if London can review that when I see them after the weekend.

Blood tests followed, only two attempts to get blood, they are getting good! and then the journey home again, which I also slept through. So yup, everything is going fine from the liver perspective. Its strange isnt it, when I was very ill, it was always the liver side we thought would give the most problems, as transplant, i think kinda makes people think, oh gosh, end of the line stuff type thing.

Got home and helped sort my dads packed lunch out, played with the tortoises for a bit and then, you guessed it, fell asleep, for another 2 hours oops. Told you I dont do mornings.

Today, I had a few bits that I needed to get shopping wise ready for next week, which is always a nightmare, but managed around the shop with mum. The first part was easier, but the more walking I did, the hotter and dizzier I got and the more I coughed. Got a real snotty look off a woman walking past in a nurses uniform, as if to say, why are you spreading your germs, I was dying for her to say something, then I would have just said something back about her spreading more germs as she shouldnt be out in a work uniform, but meh.

Got home, skipped dinner due to effort, but mum made me have milkshake and then slept for 4 hours.

Although I still dread this surgery, I think I am looking forward to being able to breathe for a while, just to stay awake for more than a couple of hours a day. The last couple of days, I am averaging about 15 hours a day, which leaves me awake for 9 hours. I am probably only active for about 4 of of those hours, not to mention how odd it is for me to pass on food ha. I know I have lost a little weight off my hips, which is always a good thing! Yet my chest circumfrence seems to be getting bigger. Please dont let me end up with a huge barrel ugly barrel chest, I already have the habbit of pursed lip breathing, any day now, they will shove a copd label on me.

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

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.

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.