CF | IVs And My Portacath




Yep, it's IVs time! Started them last Thursday, kinda knew it was coming because although the tablets I had were making me feel a bit better they weren't making me feel better enough. I'm on them for two weeks, if I've worked it out correctly then I think these finish on Boxing Day which means I'll be on them over Christmas which is no big deal...I'm lucky me and my mum know how to do IVs at home so it's not like I have to stay in hospital!

IV's stands for intravenous antibiotics, it's basically having drugs injected into your bloodstream instead of taking tablets or something. I have them when I'm feeling particularly crappy, when tablets aren't doing the trick and something a bit stronger is needed. I go to the hospital to get a needle put in my portacath, which is a little plastic bubble friend that sits under the skin with a tube attached to a vein. Mine is on my right hand side in my ribs right under my underarm so it's very out the way. It means no one can see the dressing and all that when I have IVs plus it's waaaay less likely to get knocked which is handy because the needle needs to stay there for two weeks. I would be totally lost without my portacath, it's seriously a useful little thing. Without it I would need long lines or cannulas every time I have IVs which would be a massive pain...not only because they are ouchful but because I'd need to have them in my arm or hand, meaning I wouldn't have proper use of them for the whole course. For example if it was in my hand it would be hard to do simple things by myself, like wash my hair (the dressing and needle can't get wet) or even type on the laptop. Before I had my port I'd have the needle in my hand which was constantly falling out which meant more needles which wasn't fun for toddler me! So I had the op for my port when I was about three, I had it replaced when I was about eight because I'd outgrown it but since then *touch wood* no problems. It's also useful because when I need blood tests they can take them from the port instead of my hand or arm which is not one bit painful and they don't have to wriggle the needle round to get the blood (hate when they do that, it's like oi that hurts haha!) it's just really easy.

Anyway the drugs I'm on now are Tobi (the one in the bubble) and Ceftaz (the big syringe in the top pic, the others are flushes to keep my port clear and to prevent clots.) Tobi is done once a day and takes about half an hour to drip through and Ceftaz aka Cat's Pee is done three times a day, there has to be an eight hour gap between doses so I'm doing it at 8am, 4pm and midnight. You may have heard me talk about Ceftaz before, it truly is vile as the nickname suggests. Smells horrible, tastes horrible and because it's in your blood stream you can't escape it so you're kinda stuck with that til the IVs are over. I've had it countless times over the years but it still makes me physically sick it's so gross! It makes me feel very tired too but I don't seem to have any side effects with Tobi which is a nice change because other IVs meds make me feel rotten and worst of all they make my mood really low and sad so it's nice not feeling miserable and having random panic attacks! The extreme tiredness isn't too bad at all so I would say that this lot of IVs is actually kind haha. Obviously I can't work while I'm on them because I have to rest but work are totally fine with it, as always. I'm halfway through now, I have to go back to hospital tomorrow for blood tests because when you're on Tobi you have to have them to check the dose is right etc but I had them done last week as well and so far no problems so hopefully they'll be fine too!

Thanks for reading, hope it wasn't too rambly and boring! I know it can be massively annoying when someone goes on and on about being ill, I promise you these CF posts aren't moany posts looking for sympathy. All I want is to raise awareness of Cystic Fibrosis, as it's a 'hidden' illness with no outside signs it can understandably be hard for people sometimes to get it. For example, I don't think in my last post I look like someone who'd been struggling to put on a pair of socks without gasping for breath but that's what it was like for me that day, what it's like most days when my lungs are being naughty. I'm in no way looking for pity, more for people to be understanding (which you lovely lot always are!)

Josie x
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13 comments:

  1. Josie, you have so much of my respect right now! I can't even have a blood test without almost passing out, let alone all of this on a daily basis. As for it sounding like you're moaning - it doesn't at all! It is brilliant for people like me, who have limited knowledge, to her what it's like first hand rather than just being given a very medical outline. I hope you manage to enjoy the festive season, even with all of this going on!! You definitely deserve too xxx

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  2. I'm really glad you wrote this! Before reading your blog, I knew nothing about CF. I think I've probably watched one documentary on it years ago but that was it. You're really good at explaining everything in plain english for those of us who aren't in the know. I know you've been dealing with it all your life and you've just had to adapt but I just think you're amazing! I hope you start to feel better soon. ♥

    Tara xo

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  3. Thank you for sharing, Josie. You do a great job raising awareness for CF. XOXO

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  4. I hope you're feeling better!

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  5. I think it's awesome that you write this type of post, I'm sure it can help a lot of other people and it also clues people like me in! It's good to know because I think people can be quite confused and then misunderstand which is never good. I hope these iv's do help you and that you are feeling good by boxing day :) Merry Christmas Josie, I hope you have a lovely day <3 xxx

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  6. Thank you for writing these posts, I find them really interesting and I think it's so important to raise awareness of these things & you're doing such a great job. They never come across as moany at all, in fact I always think you're so positive and strong. I really hope that everything goes well and you feel much better very soon! <3

    Jennie xo | sailorjennie.com

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  7. Admire you so much Josie & this post is really insightful. I definitely think you have raised awareness & as Jennie said the posts never come across as moany, I think you are star for being so brave and positive which is certainly the best attitude and outlook to have <3

    Hope your Christmas is lovely & the IV's do the trick for you xx

    Sophie soinspo

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  8. Hi Josie, thanks so much for explaining all of this imperative information to us. Its something so vital to you and I am grateful that you were brave enough to share it. I have been on IVs a few times and I know how disabling and painful they can sometimes be. You are an admirable and courageous person and I just know you will feel better soon because you are too strong for this!

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  9. I don't think you come across as moany at all, these posts are so informative and I'm really glad you do them, they've definitely given me a better awareness of CF and I love that you keep them positive. Hope the IV's do the trick and you can really enjoy your christmas lovely, feel better soon Josie x
    RosalieJayne

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  10. I think this post was interesting and not at all rambly. I think its really good that you are trying to raise awareness, and I find you and your blog so inspirational! I hope you feel better soon and that the IVs help in time for Christmas :)

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  11. I always find these posts really interesting, I didn't really know anything about CF before following your blog so you're definitely raising awareness (and you don't sound rambly so don't worry about that!). Lots of love and I hope you're feeling better soon :) xx

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  12. I always admire these posts from you and I hope you continue to write them. I would never see it as an attempt for sympathy. We all need to be aware and informed. Anything which brings awareness is doing the right thing.

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