Dying for Breath

Well these IVs are actually going rather well, I don't feel horrible like usual and I think I might actually be feeling the benefits which I haven't done in years! I'm coughing less and not as breathless. It's a CF miracle!
The only complaint I have is that I keep feeling warm really easily and getting sweaty, I also seem to itch more than usual and I'm having a few digestive issues (I won't go into details!!). The nurse is coming out to visit me today, I hope I'm not feeling warm because I have a temperature because then she will make me come off the ceftaz, booo!!!
My port is okish, ok I lied. I actually itched it so much I made a hole in the dressing!! I've done well not to change the whole thing, because that's when I itch it properly and it gets sore because once I start I get carried away. So I have told Pete to not let me take my dressing off whatever the circumstances and I've just been adding extra bits over the bits peeling off (or getting holes in them!).

I watched a programme last night on sky3 about a guy with CF getting a lung transplant, it was called Dying for Breath. It scared the hell out of me! Now I have always known how scary and hard a transplant would be. I also have realised I will probably need one at some point in my life, this was actually confirmed by the doctor last Monday when we were talking about things. He said looking at my lung function that he thinks I will need a transplant as some point in the future but it could be years and years away if I stay stable. So maybe I shouldn't have watched this programme, maybe I should have... I don't know.

The main things that scared me were - when he was going into theatre and knew he might not come out alive, I felt terrified for him so I can only imagine how he felt. It showed a few clips of the operation, cutting into his chest, I usually find things like that quite interesting but not when its something that could happen to me. Then when he came out he was on a ventilator, so had a big pipe down his throat helping him breathe, he was in a coma at first but then awake. I don't like the thought of that. Then he just looked in so much pain I could have cried, you could see the scar across his chest and I could just imagine how every movement was agony. Then he went to live in this house with other transplant patients where they have to exercise everyday etc to recover fully, he make friends with another CF guy who'd had a lung transplant too (not sure if this would happen in the UK). His friend then died 3 weeks later from a fungal infection. So he had gone through it all, thought he'd got through the worst, then passed away. How is that fair?

Eventually he went home and when he got an ear infection it infected his brain because when you have a transplant your immune system has to be lowered so your body doesn't reject the new lungs. He was ok but could easily not have been. Then to top it all off, the surgeon was saying that 50% of transplant patients will live one year, some upto 5-7 years. He also said lung transplants were one of the most risky transplants to do. So in conclusion after watching this programme I was rather taken aback and not really sure what to make of it. All I know is I have a new found respect for people who have had transplants! I guess I can look at it from a different perspective to people who will most likely never need a transplant, I just kept watching it and thinking that I wouldn't be tough enough to cope with it, others will look at it and think 'what a brave guy, glad its not me' or perhaps even 'he's used to stuff like this', well I don't think that's true.

I've had quite a busy weekend, on Saturday night I went out for a meal with three of my friends. I didn't get home until 10.30pm so evening IV's didn't finish until after 12 (they are taking an hour and half to go through each time, its difficult to fit them in three times a day!).
Sunday we went to my Nana's for lunch, we walked there as I have make a pact I am going to try walk Alfie everyday if possible, its about a 20 minute walk to my Nana's. I took my IV's with me and did them whilst having lunch. My dad then gave us a lift home. Then we went to the pub to meet up with some friends, I started to get some serious stomach problem though and we only stayed an hour, I'm sure I took enough tablets with the lunch, but the evidence suggested otherwise!