CF | Hospital Stay #2

Hello! So seeing as I've been allowed home for a few hours I thought I'd do an update, I'll start from Monday night when I went into hospital. I didn't get a bed until about 9pm because it's so busy, I had to go on a different ward than usual because there were no spare rooms on the one I usually go to (as I have CF I need a room to myself to avoid cross infection from other patients...we're more at risk of catching things and if we do it's going to be bad because we're bloody ill enough already!) It wasn't the best start because my room hadn't been cleaned properly (there was a load of blood on the floor - EWWW) and I didn't get my overnight feed because my nurse said she couldn't find the stuff that's needed for it (even though my dietician got it all especially.) That nurse actually ended up getting in quite a bit of trouble over that and then she tried to blame me -_- and she also wasn't going to give me oxygen which was the whole reason I had to be there in the first place. Then she said she didn't even know that I had CF. Anyway here is the oxygen thing:

Look at dem bags!

I've never had to have oxygen before, it felt a bit weird at first but you soon get used to it. In the morning a cleaner disconnected me from my IV drip. This is bad because 1) they wasn't sterile, you have to be super clean when touching IV stuff or you could very easily get an infection 2) they're not medically trained so shouldn't be touching it and 3) it was just so random, like they had no reason at all to be touching it. I was confused. We had to put in a formal complaint thing about that.

But then in the afternoon I got moved to an ensuite room on my usual ward, it's called Mulberry how apt is that? ;) You know they wouldn't let me walk to the lift and that, they made me stay in the bed while they wheeled me about and at first I felt awkward and lazy but then I felt like Cleopatra or something paha. It's much better on the Mulberry ward, the nurses are all familiar with CF so they're good at IVs and overnight feed and things like that. The first few days I felt really rough and still breathless but at least I got to stay in my favourite outfit:

A bichon frise top, 101 Dalmatians bottoms and slippers that look like Freddydog 

Because my sinuses are complete idiots I wasn't really breathing in the oxygen properly through my nose so now I spend all night and most of the day, bar a few hours, with this thing on my face.

Elephant Girl

Well attractive (!) It's really noisy, it sounds like a kettle whistling. But it seems to be doing the trick, today my oxygen levels are finally looking a little better, they're about 90% so while they should be more all week they'd been sitting at 86-87% which is pretty terrible. They're being very slow at improving, at first I was worried they wouldn't go back at all but my doctors are optimistic they will. I was a bit worried I'd get too dependent on oxygen seeing as I've been on it all the time but I'm on 28% which is really low (everybody breathes in about 21% oxygen normally if that makes any sense!) and as I'm moving about and things my lungs won't get too reliant on it to function. 

By the weekend I was feeling better, although still breathless, so as I live so close to the hospital I've been able to go home in the evenings for a little bit to have some proper dinner (hospital food sucks) have a proper bath, a proper nap and of course see little man! He hasn't been eating since I left, he gets a bit funny if me or my parents go away for a bit poor dawg. He doesn't understand that I'll be back soon enough!

In desperate need of a bath!

I think if I couldn't go home for a bit I'd go insane, all day long it's constant IVs, physio, nebulisers, blood tests and observations which is extremely boring and tiring. On Friday the doctors said they would see about getting me home for good on Monday but I'm not sure they will let me go, I think they'll want to keep me in until my oxygen levels are completely normal again but I don't think it'll be too long before they are. Today was an improvement, I went out for a bit of a walk to Nandos and I managed to go down 80 steps and then back up again (that's 5 floors!) without getting too out of breath. I'm over 55kg which is madness, I've never weighed that much before so that's good! I also think the beautiful weather is helping, today was so lovely. And I haven't had any panic attacks or anything (apart from a little weep this morning alone in my room feeling sorry for myself because it was sunny and I wanted to go out because I was feeling a bit trapped haha) so this time my hospital stay hasn't been as bad. Last time it was because the nurses were mainly agency ones who didn't know CF and weren't at all sterile with IVs but this time they all know what they're doing which puts me at ease. There's this stupid rule now that you're not allowed to do your own IVs (even though me and my Mum have been doing them for years -_-) but because these nurses are good I can relax a little more. I'm very particular (read: petty and annoying) when it comes to my medicines and treatment and things, I have my way of doing them and feel a bit uneasy when people try and take over but this time it hasn't been too much of a problem...although I can't wait to be in charge of my own treatment again!

Well I hope that wasn't too long and boring, I think it probably was but that's exactly how hospital stays are...long and boring! Hopefully next time we speak I'll be out and outfit posting, hope you had a lovely weekend in the sun!

Josie x
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22 comments:

  1. I'm glad you're finally somewhere where they know what they're doing! Hopefully you'll be able to go home soon, sending lots of love :) xx

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  2. Oh Josie! I'm so glad you're on the Mulberry ward where you belong, what a bunch of dramz! I really hope you feel better soon, I'm also glad you've been able to pop home for a bit. My grandad is in hospital and his breathing was at 94% which they were worried about, I can't imagine how breathless you must've been! Huuuuge hugs.

    Tara xo

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  3. Oh man, I really hope you are feeling better soon Josie! I can't imagine how awful you must be feeling and now stir crazy you must be getting! If it's any consolation (it's not but hey), I'm also feeling like a pin cushion. I am having blood tests and vaccinations galore - only every time I have one, I pass out! Funny at first but now just embarrassing haha. Sending lots of love xxxx

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  4. Oh you poor thing, I'm glad they got you on the right ward in the end, fingers crossed you get home for good soon! xxx

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  5. I hope that first nurse gets a boot up the bum, but at least next time she should know how to deal with a CF patient. Hope you can go home soon. x x x

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  6. Hi Josie, I hope your health improves again soon and you get to go home permanently. I read your post with interest as it was very informative about how hospitals deal with CF. I'm pretty shocked and appalled that your treatment got off to such a bad start, glad they're looking after you properly now though. Xx

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  7. Hey lovely, hope you get to go home soon! Sounds like the first night was a bit of a mare, but glad it hasn't been too unbearable and that you get out for Nandos and everything! Plus, being on Mulberry ward makes it sound so much more bearable, haha! I love little coincidences like that :)
    xx

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  8. Oh Josie, I'm so sorry to hear you've had to stay in, hope you're feeling better asap & fingers crossed you'll be allowed home soon!
    That's awful about the first ward, actually quite appealing! I honestly I don't think I've ever had a good stay in hospital though, so it doesn't surprise me. I know the nurses are busy & overworked & all of that, but it's the last thing you need when you're feeling that ill & to have the extra worry. Glad you've been allowed to go home for little trips though & to see Freddy, I'm sure if he's anything like Nico he was ecstatic to see you! I love that your ward is called Mulberry & the whole head to toe dog outfit, I think I need to up my game & get myself some husky slippers, you're out doing me on the crazy dog lady front! Haha! ;)

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  9. Aww sending you all the well wishes in the world sweet girl! Sounds like you cope ever so incredibly well, god knows what I'd be like I'm so useless about hospitals, I think if we all took a bit of courage from you the world would be a lot less moany and definitely more brighter <3

    I don't know who else could rock such amazing PJS in hospital either, I bet the hospital staff are loving those, they are so damn cute hehe. Have been thinking of you lots and I'm sorry to hear you had such an appalling nurse, so glad you're with staff that are better and a definite improvement on the last lot, and quite rightly so!

    Lots of love and hugs for now & always here if you ever need a friend *Mariah Carey cliche alert* ;-)

    Sophie <3 xxx

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  10. Oh gosh, sending lots of love your way as always! <3 <3

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  11. Hi Josie, thanks so much for the update, I wish I lived nearby so I could bring you snacks and magazines to the hospital. It sounds like a terrible first day there, that nurse shouldn't even be working there if she is that inefficient, you have got me riled up about that one, I can't believe she did that to you! I am glad you are in your old ward, I hope they are taking very much better care of you there. I hope your breathing improves, it can't be easy on the oxygen but for now all you can do is whats best for your heath. Glad to hear you get to go home for a bit and have a walk about. Didn't realize you had Nandos there, did you know its a South African chain? Love your cute pjs, still stylish even in hospital. Sending many hugs your way!

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  12. ((((BIG HUGS)))), Josie. Thank you for updating us. Posts like this are enlightening and educational for many of us, albeit it's not always great news:( Hang in there, girl, and you'll be feeling better in no time.

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  13. Thanks for keeping us updated Josie- sounds like you are really going through the wars at the moment...but massive respect for dealing with it with your good old humour and style :-) Hoping that you're out soon so you can have cuddles with Freddy and get back to your normal self. And how awful that you've had to make complaints about staff!! Kinda seems like the last thing you need to be dealing with when you're ill.
    Sending hugs your way, Daisy xxx

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  14. As a nurse I'm horrified at your treatment Josie! I'm glad you've moved wards now. Hope you are feeling better soon and can come home.

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  15. God, your first few days didn't sound good! Can't believe the nurses didn't know what they were doing. At least you're doing it in style with those pjs! Glad you can go home and visit Freddy, bet he's missing you like mad! Fingers crossed you'll be out soon! Love xxx

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  16. The first few days sound like a nightmare. I hope something comes out of your official complaint, because that is not good at all - stupid cleaner!
    When you were being wheeled about in your bed, you should have done a classic Queen wave to your subjects :)
    Still trust you to get some selfies in while you're in the hospital - you are rocking those pj's girl!

    Gems x
    Fashion, Well Done

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  17. Sorry to hear you've had to stay in hospital - they're really not the funnest of places, even if your ward is called Mulberry! I'm sure little pup is missing you millions! Sending you big hugs and get better vibes xx

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  18. The whole experience sounds awful, I can't believe how unprofessional that first nurse was! I hope you feel better soon, and can return to more fun things (such as your dog - who looks adorable- and fashion!) asap. Good luck!

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  19. Can I please steal freddy and he and olly can be bichon pals, he's the bloody cutest and looks a terror but one you can't tell off!!! I love that you're still so positive, the fact that you felt like Cleopatra had me really loling, I hope you are feeling better and I hope that gross woman got a good telling off, people are stupid!! xxx

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  20. Oh dear, sounds like you had a terrible time on the first ward. At least they know how to look after you properly over at Mulberry where you belong!
    Take care. x

    Leanne - A Slice of My Life

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  21. just catching up on your posts, I can't believe what happened on the first ward it's SO bad. I girl I used to go to school with had a really similar experience with a nurse not doing stuff right and then blaming her for it....so out of order.
    glad you had a better time on the second ward though, the Cleopatra bit made me laugh lol! Hope you've made a v speedy recovery since this post :) xx

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