Wednesday, 20 November 2013

Paddy's in the spotlight again

For any new readers, just so you know Paddy is my port and not a mad Irish cousin of mine!
After I was discharged from hospital on the Friday, under the promise I would take it very steady, I stupidly got my IV line caught when connected and ended up yanking my gripper out - not a pleasant experience! I rang the cf ward as it was 7pm on a Saturday & all I could hear was Sweety laughing on the other end of the phone saying 'what are you like!' so I quickly popped down (bonus to being 1min away from hosp) and she put a new gripper in. Unfortunately some of the drug had gotten in the skin so for the next week I spent everyday going down to hospital as it would work for a while and then stop. In the end it wouldn't work at all! Judith said she'd book me in for a Portacathogram (which Charlie and I think sounds like some sort of strip-o-gram for hospital people!).
My worst fear was that it was kinked or there was a leak which would mean an op to have it out and I would be Paddy-less. Luckily the scan revealed that nothing was wrong and we've put it down to the area being swollen due to the drug leaking into my skin when I pulled the gripper out. So much drama.
I was in a bit of a funny mood all week, quite low and fed up. I guess I was thinking too much about things. I went back to work and was just exhausted, even though I had only done two days and then it was the weekend. Even today, it's only Wednesday and I'm ready for a weekend so I can rest.
The main worry is I didn't manage the two weeks of IVs as paddy threw a strop so I could get poorly again soon, but then on the other hand I could be fine! The past week I've been feeling okay but a temperature of 37.8 every day and I'm not entirely sure why. They usually come down but then later on are back up again, I've had a little bit of chest pain but my breathing is ok and I'm feel fine in myself. Me being me just carries on and tries to ignore it! I was sitting in bed the other night thinking other people don't have to worry this much about the possibility of getting sick, to others it seems such a silly thing to worry about as you can't do anything to avoid it (as such) but when you're in that situation it does crop up in your mind from time to time. In a couple of weekends it's Tom's birthday, then Christmas, then new year and then my 21st & I was thinking, if I need IVs I don't want to miss out on any of these occasions, hopefully I can make it to the 9th Jan without feeling ill enough for IVs!
Well now all the boring medical things are out the way I can say that I have finally sorted out my 21st (minus a few details like making things) so I am very excited about that! I have found the perfect sparkly dress for it too so even more exciting although maybe not for any male readers who probably have stopped reading by the word 'sparkly'! :)
I'm just needing to organise myself at the moment as I have so many things I need to do for my birthday, Christmas, work things. Which is mainly why it's taken me a while to write this blog as I've been so busy doing various things.
Have a good rest of the week and I'll try to keep things updated!

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Sunday, 3 November 2013

Hospital freedom!

After a few days in hospital they said I could be discharged as long as I took it very steady, however it wasn't Dr Ho that saw me (was some random but friendly registrar) and I reckon if Dr Ho had come he would have kept me in over the weekend but as you know, I was determined to get back home. I did feel better otherwise I would have stayed but I felt like I was on the mend so homeward bound I went. Whilst I was in hospital they let me try a machine called 'the bird' which is a machine that basically breathes in for you. I used it for physio, it was very strange at first as it just forces air in to your lungs but it felt great to not have to put the effort in and parts of my lungs that haven't been inflated in a long time were getting air.

It got me thinking though.. Spending time in hospital, doing IVs at home just seems so 'normal' and 'everyday' to me, it doesn't seem like a strange occurrence. Quite strangely I became jealous of those who can just go out when they want, not have to rely on how sick they
feel, have to juggle medication times, not sit and think 'how far away is where I need to be from the parking' incase you can't walk that far. Pretty much everyone I know was out celebrating Halloween last night whilst I was tucked up in bed, feeling sick and it got me so down..CF presents mental strain as well as the physical and a lot of people don't realise this especially when you're not sitting there moaning about it 24/7.
When I'm well it's okay and I can do a lot of things and not have to worry too much. But when I'm ill I get ill very quickly and it seems to hit me hard, this time a lung function drop of a litre in a week and struggling to breathe comfortably.
However then comes the guilt, I see my lovely friends who are on the transplant list suffering and I feel so bad about complaining about how ill I feel when in comparison, they're suffering so much more and everyday. Sometimes things feel so unfair, people have to go through this, their close family and friends go through it with them yet so many people are so oblivious to what goes on because a lot of CFers just slap on a smile and say everything's 'okay'. We NEED to raise more awareness, the bad side of things but then the good side of people who have had their transplant are doing amazing things! So here comes the plea..please please sign up to become an organ donor, it is so urgent. If it was your friend or your family member or you dying you would want the gift of life from a stranger so don't be hypocritical and sign up - the link is on the side on my blog, live life then give life.

Me being the eegit I am, managed to yank out my gripper yesterday. I was connected to my IV put got up and the tube got caught on the sofa so the needle moved and the mero was going into my skin rather than my port which really bloody hurt! So I popped down to hosp (so glad it's a min away!) and had a new one put in :) Today I've got a few chest aches/pains and I'm feeling rather sick so I'm hoping that it soon stops as I know that if I see the Dr again he'll admit me! I've got about a week and a half off work as I can't work with my gripper in so I'm going to go for walks around garden centres and things, seeing the Christmas decorations, with Mum to build my stamina back up and get these lungs working properly :)
Fingers crossed everything starts to go on the up.

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