Sunday, May 08, 2011

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.

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