On Friday I had the lovely film crew round from the CF trust, Oli, Holly, Paul and Craig. I wasn't exactly sure what I was going to be filmed for but I knew it had something to do with CF week and a video raising awareness of CF! I still don't know 100% but I just do as I'm told :D hehe!
There were cameras and lights galore, 7 people in the house, including Josh, Mum and I, two mad little puppies in our, not so large living room. It was pretty manic but we got the job done.
I simply had to answer a range of questions, most of which I'd spoken about before, but there were some which I hadn't really been asked, particularly questions regarding whether I think I'm going to get my transplant, the second was how do Josh and I feel knowing we have to have a 'plan B' wedding in place in case things don't go to plan, also at what stage will plan B become the actual plan.
It was very thought-provoking and I guess my simple answer is that I always try to remain as optimistic but as realistic as I can. I know the stats, I know the figures, if I do get put on the active transplant list, there is a 50% chance I won't get a transplant, a 10% chance I won't make it through the operation, then there are percentages for how long you will live post transplant, 30 days, 1 year, 5 years, 10+ years. Doctor Carby told me at my assessment they usually predict the 5 year percentage depending on the way the first year goes, if you have a pretty smooth year, you have a good chance of having an extended life as opposed to if things are not so good, this means the chances are reduced but by no means out of the question.
It's important to stay realistic because those statistics are there for a reason and that reason is that it is real, 50% really won't get their transplant. There is no hiding from that fact, but on the other hand, if I didn't stay optimistic I wouldn't be living my life I would just be waiting to die, just another stat, I don't want that to be me and I hope it won't, therefore I find it important to stay positive and have belief that it will happen :)
There were two super cool things that happened during the filming, the first was using the clapper board, action... Lol! The second was hearing 'that's a wrap' when we were finished, it was very movie like and one of the guys asked me if I'd done anything like this before, I said I had been on the news twice, they said I was very good and seemed a natural. So my career choice now, is an actress ;) clearly a joke, but hey!
On Monday I had a photographer come round on behalf of the CF trust to take some photos. I had various different photos done, simple shots, photos with me and Josh, some with the puppies, some of me playing poker, pictures with oxygen on and me on my iPad as that is what I do most of the day! Haha. It was fun :)
The not so fun news, was that in the space of 2.5 days I have coughed up blood 3 times, two of them were not too much but the other one was quite bad so it was scary, I said if I coughed up anymore I would go to A&E as I was told by my CF team it could indicate a lung collapse or pneumonia etc. but so far there hasn't been anymore, other than some bad chest pain I've felt okay. So I'm happy to get through Tuesday then I'm off to clinic Wednesday anyway for my day 7 IV checkup. I'm hoping there isn't a problem and I can be 'fixed' (if only) if not, I might have to go in, but I will wait and see what happens Wednesday.
Before that though, Wednesday morning we pick up our new car :D we have finally got a motability car, I lose £200 a month but the only thing we have to pay for is petrol, so it works out okay. It's a brand new Seat Leon, in white. Very excited because we are finally getting a nice up to date car.
That is about all for now, I will probably blog Wednesday night unless I'm too tired on what is decided at clinic, please keep your fingers crossed that I am okay to carry on at home and there is no serious problems :)
Thanks for reading.