CF | Hospital Stay #4

Hellooo! I'm back! How are you? So my 'mini-stay' in hospital wasn't quite as short as I thought it'd be, I ended up being in just over three weeks. Turns out I was more unwell than I thought and I just took a lot longer to get better. 

I had some fluey thing since New Year that just didn't really get any better, by the middle of January I was really struggling to breathe. Turns out my oxygen levels were low at 87% (you get given oxygen if they go below 90%) and the infection I had was quite a bad one...my infection markers were 260, when you're healthy they should be below 5 (although a person with CF's will usually be under 20 as we always have some kind of infection going on!) But 260 is still a lot higher than 20 so I was quite ill!

I went up to Mulberry Ward, got my own en-suite room (CF patients have to have their own rooms because we're more at risk of catching bugs from others) with a TV and exercise bike so I was as comfy as you're ever gonna be in hospital! They put me on humidified oxygen which is heated oxygen (37 degrees hot!) which for me personally helps me breathe better than the regular stuff because I just find it really helps to clear my chest. I started IVs and had lots of chest physio all day and while I improved a bit I just kind of stayed at the same place for a while and didn't get any better.

Wearing humidified oxygen...good stuff, but quite hot and uncomfortable to wear!

So it was really frustrating waiting for my lungs to behave themselves, I was in the same room basically 24/7 apart from a couple of times where I got to go home for an hour and I was going a bit stir crazy. I'll admit I did have a few mini (and one major) meltdown because I did feel quite afraid. Needing oxygen is still quite new to me and at first I think everyone does find it a little scary. Especially because they've decided that I should have oxygen at home because the last few times I've had chest infections I've needed it but have had to wait for a bed to become available on the ward...this way I can get it straight away when I need it and will be a lot more comfortable instead of having to wait (I was so breathless before I went in I struggled to do things like brush my hair and put my shoes on!) It took a few days to get my head around this, in my mind home oxygen was always a step towards impending doom *dun, dun, duuuuuun* but after a chat with my CF team I know this isn't the case. They can't promise me that my lungs aren't declining (this bloody illness is hard to predict!) but they don't think I'm heading towards that stage just now. They said some people have home oxygen when they're ill for years and years, it's literally just a boost and doesn't necessarily  mean you're going downhill any time soon. When I'm not ill I can just shut it away in the cupboard and forget about it!

Valentine's Day flowers

Like now! It was so strange, after weeks of feeling the same I woke up on Saturday morning feeling a lot better so they put me on the lowest amount of oxygen and then by Sunday I was off it so was allowed to come home yesterday. No one knows why I suddenly picked up, personally I'm thinking it has something to do with the power of lurve...on Valentine's Day the lovely Sophie came to visit me and then that evening I got a surprise visit from one of my bestest friends Krystyna who came from Brighton to see me! Who needs boys on Valentine's Day eh? Seriously though, sorry to be cheesy but I really do have the best friends and family. CF can be so scary and can make you feel very isolated but they're always there to cheer me up and I never feel alone. Especially my mum, she does everything for me and I really want to treat her to something because she's the best and has to put up with so much stress! 

So I'm so happy to be home with my family and things and Freddydog, I got so homesick! I have another week of IV antibiotics and I need to build my strength back up but I just feel buzzing to be able to breathe properly again! I feel so grateful that I'm getting better, the feeling when you're breathing by yourself and seeing 95% oxygen levels after them being low is just great. Honestly take it from me, you and your loved ones health really is the most important thing...everything else really doesn't matter as much. On that note I hope you're well and I'll hopefully be back blogging regularly again!

SHARE:

57 comments:

  1. So glad you're home and feeling well!

    www.jennagalley.com xx

    ReplyDelete
  2. Glad that you are home and feeling a bit better, being unwell sucks. You aware so right that the only thing that matters in life is your health. I hope now that you can rest up and build up your strength Lucy x

    ReplyDelete
  3. glad you're home and feeling much better! you always seem really positive and that's such a good thing! hope freddydog is okay too. xx

    ReplyDelete
  4. You are so brave, and telling it the way you did, I can only imagine how scary it must of been for you? But, now your home (the best place in the world) and getting stronger all the time! Today here we have fab sunshine .......'please summer come soon' as this will make us all feel better ! And as you say the power of 'lurve' is the key to it all! Helen xx

    ReplyDelete
  5. I'm really glad you're back home now, I can imagine how stressful it must be being cooped up in a hospital room for ages! And the weather seems to be improving a little now too, just in time! I hope you get to do loads of fun things this spring! xxx

    ReplyDelete
  6. So sweet of your friends to go and visit you, hope that cheered you up a bit! Glad you're home now :)

    Julia x

    ReplyDelete
  7. This is why I love your blog Josie!! You really put things into perspective and you're always so positive, when I'm sat here full of cold feeling sorry for myself! You're such an inspiration to me. So glad you're home and feeling a bit better :) xx

    eat-sleep-breathe-fashion.blogspot.co.uk

    ReplyDelete
  8. My goodness Josie - I hope you're feeling better.

    Lizzie Dripping

    ReplyDelete
  9. So great to hear from you, Josie. And way to go on feeling a wee bit better:) It's great to see you have such a great support system in your friends and family. ((((hugs)))))

    ReplyDelete
  10. So so glad you are home, being in hospital is just not fun, even if you have really hot nurses/doctors! You are so so strong Josie. So much love xxx

    ReplyDelete
  11. Welcome back gorgeous, that's an impressively high infection marker (CRP?) the highest I've seen in one of my patients was 188! xx

    ReplyDelete
  12. Happy to hear that you're back home and feeling a bit better! I'm currently working in a lab and writing my masterthesis about CF and two types of bacteria who are most likely to cause respiratoral infections in CF patients, so I know how sensitive you are to infections. Take care of yourself :)

    ReplyDelete
  13. I'm so glad that you're back home and feeling better! Lots of love xx

    Toasty

    ReplyDelete
  14. So sorry to hear this!! Glad youre on the mend x

    Lizzie's Corner

    ReplyDelete
  15. Blimey, you've been through the wars. I'm so glad you're home and doing better. xxx

    ReplyDelete
  16. So pleased to hear you're home and feeling a lot better. It sounds like you have great friends and family around you to support you. It must be so nice to be back home now xx

    Ioanna | Hearting.co.uk

    ReplyDelete
  17. so glad to hear you're home Josie! CF is a horrible thing :( xx
    emilyjanewebb.blogspot.co.uk

    ReplyDelete
  18. Your such a strong person Josie. So glad your home now and I sent my love to you :) x


    Beyond The Velvet | Beauty, Fashion & Lifestyle Blog

    ReplyDelete
  19. So so glad that you're finally home and feeling better sweet!!! <3 xxx

    ReplyDelete
  20. Oh, love don't you dare apologize for being "cheesy"! Your post moved me to tears! I am so happy that you are feeling much better. Praying for you to get better even quicker~ Sending lots of love your way <3 <3 <3
    xxx

    She Will Be

    ReplyDelete
  21. I'M SO PLEASED YOU'RE BACK! Proper missed your updates.. I'll let you off and everything though ;) Nah, seriously I am really glad you're well enough to be out of hospital, you don't deserve all that crap xx

    Sam | Samantha Betteridge

    ReplyDelete
  22. Just wanna say thanks for the New Year greetings, Josie. :) I'll send some of the food over:D

    ReplyDelete
  23. oh gosh what a journey, glad you're better now xx

    Hannah | Heyitshannaah

    ReplyDelete
  24. Get well soon Josie! Stay strong. xx


    Julie
    www.rainingcake.com

    ReplyDelete
  25. I'm so glad (and relieved) you are home and feeling better! I really felt for you seeing some of your Twitter updates, but I am never sure what to say at the best of times. At any rate you were in my thoughts while you were in the hospital! xxx

    ReplyDelete
  26. Thank you Lucy! I hope you're feeling much better now x

    ReplyDelete
  27. Thank you! Freddydog is ill now :( but on the mend! x

    ReplyDelete
  28. Thank you! The weather has been so lovely, makes such a difference...can't wait for summer! x

    ReplyDelete
  29. Thank you Carly! Can't wait for warmer weather, SO over winter haha x

    ReplyDelete
  30. I know, they're just such cuties! x

    ReplyDelete
  31. Thank you <3 Hope you're feeling better now! x

    ReplyDelete
  32. Thank you Emmy! They really are the best, don't know what I'd do without them! x

    ReplyDelete
  33. And it's never good looking so rough in front of the hot doctors haha! Thank you <3 x

    ReplyDelete
  34. Yeah, CRP! I know I was like woah haha x

    ReplyDelete
  35. Oh really? That's so interesting, good luck with it! Thank you x

    ReplyDelete
  36. I think we all have this winter! Thank you x

    ReplyDelete
  37. Thank you! I really do, they're fab x

    ReplyDelete
  38. Thank you! Yeah it can be such a n00b x

    ReplyDelete
  39. Thank you Sam! Will defo try and blog more now I'm back! x

    ReplyDelete
  40. Oh god, ignore twitter updates when I'm on these meds...turn me into a crazy and over emotional person haha! Thank you xx

    ReplyDelete
  41. so glad you're finally home and are feeling better! Really puts things into perspective reading things like this, you're so brave! Bet Freddy was v v pleased to see you too <3 xx

    ReplyDelete
  42. Aww so glad you're back home where you belong Josie! I'm so sorry you went through such a sucky time, you really are the bravest, brightest girl in the world. So proud of you and have such admiration and awe for you and the way you handle everything so amazingly well. You had every reason in the world to feel the way you did, a meltdown was well and truly justified, I think you handle this better than anyone would. Like I said, the bravest, brightest!
    It was such a pleasure to come visit you; can I just say who else could rock Parisian chic so well in a hospital ward?! Definitely made my Valentine's to come hang out with you ;) You have to be the most stylish fashionista they've ever seen! <3



    Always here for you, anytime, for anything. Love you!


    Sophie | soinspo xo

    ReplyDelete
  43. Even though you're so brave, it's great that you are so honest about being scared and needing those around you. I'm in a similar position, and often feel like people don't like you to talk about the inevitable or about the overwhelming feeling of what you're going through ( I hope I've got that right for you). Thank you for talking about it so frankly. I hope you feel better for much much longer xo

    ReplyDelete
  44. Hi Daria,


    Thank you so much for your lovely comment! I'm sorry you're going through some similar things right now.


    I get so nervous about talking about how I really feel when it comes to the scary stuff because you're right - people don't really want to hear it. For the people that love and care about you it's upsetting for them and for those who are just reading about your illness or whatever it just isn't what they're used to. Admitting you're scared isn't very inspirational now is it? ;) But I'm definitely starting to realise as I get older that bottling it up isn't the right thing for me or for other people because they should know what it really feels like to have to live with things like this.


    I hope you're doing ok x

    ReplyDelete

Thank you! Tweet me @asickchickchic ♥

© What Josie Did Next. All rights reserved.
BLOGGER TEMPLATE CREATED BY pipdig