Saturday, 27 July 2013

Hotel Frimley Park Hospital

In the end I listened to everyone telling me to see the docs & popped down to the CF unit on Thursday - however I did make it to the end of work so I'm very happy about that! :) 
Very odd things happened..I did my lung function and sats (oxygen levels)...they were fine. Dr Higton took me for a 30 second walk but I was just gasping for breath. We sat back down in the room and all tried to figure out why I was so out of breath, yet my obs were all appearing ok? She said normally if a patient came in like that you'd assume it's a blood clot in the lung, although for some reason CFers don't tend to get those - but she thought she'd do some bloods just to check as it's not impossible..that was a long hour waiting for the results of that, just filled with panic at 'what if it's a blood clot' 'what is making me feel so ill' 'will I be staying in'. Luckily at 3pm the results came back negative - phew! Still back to square 1 where we have no idea what is doing this. So after a chat with Dr Higton we came to the conclusion it'd be best if I stayed in, especially with the weekend coming up - that way they can keep an eye on me. We're pretty sure it's just another chest infection. I've got my own hand held lung function machine and that read that my lung function had dropped from thursday - not sure how accurate it is but I think last time it wasn't far out.
Yesterday I had quite a lot of visitors which was really nice :) always cheers you up. At least I'm allowed my laptop, ipad, phone, any food, takeaways, dvds etc. Plus all the staff are LOVELY which makes it a lot easier. And knowing mum is only 5 mins round the corner is really reassuring. 
I did start to feel better yesterday but I think it was the adrenaline of seeing everyone, plus bit of a brave face. But yesterday evening about 9pm I was very short of breath again, felt awful. Tried a little walk but couldn't really manage. And this morning I've woken up feeling worse than when I came in!! I'm not breathing as quickly but I'm a lot tighter and feeling more 'yuck' which is really disheartening as I don't want to stay in here long, they originally said go home on Monday if I was feeling better, but now I'm feeling worse maybe I wont be. We'll see! 
I had a bit of a mini breakdown last night when everyone had gone home; why do IVs make me so bloody emotional?! This is my first hospital admission without Sammy. My lovely friend Samantha Morris passed away about about 10 months ago, whenever I was staying in she was always in too so we'd text or be sneaky and try to meet up in the corridor. The amount of times I have gone to my phone to text her, I even found myself beginning to type in her name at one point. It just all hit me - I didn't have my sidekick in the next room. The only reassuring thing is whilst I was a blubbering mess my little light flickered once..I swear! She must be keeping me safe whilst I'm in here..either that or trying to scare the doo-dah out of me knowing her! :) I then layed there in the dark thinking, & without wanting to sound morbid, I realised that this is life, it's not just some little thing that'll go away as I often try to convince myself & others. Hospitals. IVs. All of that. Yes I know I'm not in hospital often but at some point I probably will be..when I was a kid I always had this thing of 'it'll never happen to me' as I was always so healthy. But it's a times like these it's a bloody big reality shock that makes you realise that you are stuck with this and it may be ok for a while but it does come back, it will come back. 
Even when you're not as sick as people on the transplant list, but you're so out of breath just walking to the bathroom, transplant always crosses your mind, even if it's a distant thought for the future it's still there. Some fellow bloggers have had some really hurtful comments on their blogs when they've been open & honest like this, so if you don't like this sort of thing then just stop reading & go - I never usually write or talk about this sort of thing so it's taken quite a lot to do this - if you don't like it, lump it ;)
I'm just so thankful I have the most supportive family and friends around me because without them I wouldn't manage any of this. My mum is here everyday, nearly all day, and if I needed her at 3am because I felt worried I know she would be down without asking any questions.
Anyway, on to something slightly cheerier! My fave night nurse was on last night, Sue. She came in, gave me a massive hug and said she'd missed me. We always have such a laugh which really makes it so much easier as night times when you're feeling ill are horrible. I'm going to ask later if I can leave the hospital to go out for some dinner but the hospitals regulations have changed so I might not be able to! Maybe I should start digging a tunnel just in case ;) 
I'll keep you all up to date when I can, fingers crossed for getting out Monday so I can finish my IVs off at home!

1 comment:

  1. I love Nighttime Sue. She's crazy.