Update

I'm back on IV's again, I managed a whopping 2 weeks off. Wooweeee lol. It's still January and I'm on my second course of IV's in 2012 lol.
I looked at my annual review letter earlier from Feb 2011 and it said in 2010 I had two courses of IV's, one in May which I only had as a precaution due to going abroad, it's always best to cover yourself when going on holiday because it's not ideal to get sick! Also you have to be in as best condition to fly. Obviously this doesn't apply to me anymore, I can no longer get any travel insurance and as I use oxygen and a wheelchair, it's not easy to sort all these things out. Anyway, the second course of IV's was November which was also when transplant was first mentioned to me and they thought I was ready to be referred but obviously my weight was too low.
Then in 2011 I had 9 courses of IV's two of which were 3 weeks courses, so I spent a total of 20 weeks on IV's compared to 4 weeks the previous year! What a difference, it's scary how quickly things have changed, I used to rarely need IV's because I would have just tried to cope and tended to get away with it. But now my breathing and coughing is so difficult to deal with, as soon as I start slipping I have to have IV's to prevent my infection getting so out of control it could end up being a serious problem.
When I saw the transplant team at Harefield they said my lungs looked pretty bad and they also said due to that a bad infection/nasty bug/flu could kill me, for example if I got the flu virus, pneumonia etc. so it's very important for me to stay on top of my health, even though IV's are one of the worst things to put up with, I can deal with everything else but IV's suck. I suffer so badly with side effects, despite taking tablets to control the problems, like sickness, headaches etc. it still ruins me and basically knocks me out for the entire course. Something which is supposed to be doing good, tends to make me feel so bad I wonder why I bothered starting them in the first place, lol!! IV's rarely make me feel 'better' anymore and that is why I have to have them so often, I only feel a little less breathless while I'm on them, then the day after I stop I go downhill again immediately and feel back to square one again. So it is annoying, but as I said, when my CRP (infection levels) are elevated, I have to have them to get those numbers back down, they should be below 10 at least, I don't know what mine were this time, I will find out when I go to back for my day 7 checkup next Wednesday.

I did receive some good news at clinic, I've been put on a different pain killer, Papworth usually only prescribe Tramadol as the strongest pain killers but it did not agree with me, so I'm on something else nownwhich has definitely helped :).
The second bit of good news was regarding my liver, obviously at my assessment Harefield were slightly concerned about my liver disease because Papworth hadn't sent much information about it, to what extent it was etc. anyway, I asked my consultant if this was a reason to worry about not being listed and she said, once Harefield got my liver write-up they were happy, I am seen by Addenbrookes for my liver and their consultant said on my most recent ultrasound scan, everything seemed okay and the only reason I am said to have 'liver disease' is because I have early stages of it, but mainly because my blood doesn't clot too well despite having high doses of Vitamin K, IV and oral tablets, nothing really improved my numbers. But they said this might not even be due to my liver, it could be because I am underweight and my body doesn't have all the proper nutrients required to produce clotting factors. So I will take this as a positive because unless my numbers are so drastic that there is a risk I could bleed to death during transplant or something, then I think I'm okay... Time will tell, but for now, I'm less worried :)

My weight was down but I have been having a lot of sickness and stomach issues lately, so I'm hoping once this passes and I'm not sick so much from coughing particularly, then I will start gaining again.

That is about all to update on :)
Thank you for reading.
xxx