Monday, 26 November 2012

New Nebbie!

Yay, I've finally got my new nebuliser! I went last Wednesday for the trial dose of Azteronam (also known as Cayston) to make sure I was okay to have's usually used when you can't have Tobi/Bramitob or Colomycin like in my case.
I quickly go it all set up with the physio, puffed away and boom, no reaction and off I went.

It's difficult having to do it three times a day as I end up doing it around 7.30 before work, 3.30 the minute I come out of work and then around 10ish too. The good thing is it's a month on then a month off :) so that's means I do get a break from it! It's the last anti-pseudomonal thing I can use before IVs as nothing else works. Other CFers I've spoken to said it's brilliant so fingers crossed it does some good!

Other than that I've been feeling pretty good lately which is nice. Still getting the odd chest pain here and keeps swapping from one lung to the other but it's only for like 10mins here and there so I'll just keep an eye on seems to be getting less frequent so maybe the neb is just moving a few plugs!

I went and saw James Bond: Skyfall the other night which was AMAZING! One of the best films I've seen in a very long time. And it's bought back my childhood desire to be a spy..but seeing as I can't even do a forward roly-poly it doesn't look like a promising career ;)
Mmm mulled wine & roasted

Anyway, my next appointment is on 18th December (yay for monthlies!) so hopefully I'll manage fine until then and the neb will have done some good..if it's not made a difference or I've got worse they'll just take me off it as it's so expensive it's not worth keeping me on it if it's not doing anything!

Friday, 16 November 2012

Hospital time again!

After feeling horrendous all week & having lungs that felt like glue I thought 'oh here we go, I'll go to hospital, lung function will be awful and I'll be back on IVs'! So I went to hospital.. and for some reason my lung function had actually gone UP! What on earth?! So my lungs feel like shit and my lung function increases..that makes sense. Haha, oh well I'm not complaining! 
This is what I assume the Pseudo in my lungs
looks like!
Dr Ho came to see me, I explained that the horrible chest pains went & he said he thinks it was a plug that was causing it. He then said he thinks the reason I've felt so ill and my cough has been sounding quite nasty is because of the pseudomonas. Basically, Pseudo is a really nasty bug that non CF-ers have in their lungs most of the just doesn't affect you! Whereas with us CF-ers, it can affect is quite badly. Unfortunately the Pseudo loves my lungs a little too much and I've been colonised by it (a lot of CF people suffer with this) - it basically means that I will never get rid of it, it'll always be in my lungs..I've just got to try and prevent flare ups! So Dr Ho thinks the little Pseudo have been flaring up again..seeing as the trial dose of Tobi in the neb didn't work the only other options of treating Pseudo and trying to keep it at bay are either IVs or nebulised Aztreonum. Seeing as my lung function and SATs were okay, we thought we'd give the nebuliser a go first :) 
It's very expensive, around £20,000 a year! So he and Judith sat down with me and said was I prepared to have it because it's not something you can just decide to do when you fancy it, you have to be committed to taking it because it's so expensive, you don't want to waste it! Of course I said yes. Only 5 people in the unit are allowed to have it because of the cost so I'm quite lucky :) 
Unfortunately they have to order it in, so next week I'll have to pop down and have a trial dose with the physio and Judith to make sure it's okay with me & if so I can begin! It's a month on, a month off so that's quite handy too. Only downside is it's 3 times a day! So that's going to be hard to fit in with work and everything but I'll do it! 

I mentioned to Dr Ho about Kalydeco & he said it's so annoying having something that could so improve quality of life but not being able to have it! He said he wishes he could give me the tablet now! But the good thing with Frimley is the MINUTE it becomes available I will receive it :) So please don't forget to keep mentioning it to people, the more people talk about it the more people will know about it and the quicker can create a fuss about it all. At the moment we are waiting for them to make a decision but we don't think it'll be before Christmas..let's hope and pray the decision is a yes!

Anyway, I'm knackered, nearly over this chesty cough now I think but no energy left at all after hospital! So I'm off to relax :) Have a lovely weekend! xx

Monday, 12 November 2012

Little move around!

Had a little move around of a few things on the rid of the pictures that were always down the side of the home page as it ended up looking too messy so I left one there and then on my 'about me' page I put lots of pictures up on there :) 
If anybody has any idea on how to make pretty headers/signatures/buttons etc PLEASE feel free to DM me on twitter or facebook or anything because I want to try and make it look a bit prettier but not sure how to create all of these things! 

Lungs wise, I didn't manage work today..lungs just weren't up to it! Slept a lot today & do feel a bit better for it so think I'll be going in tomorrow :) Rang hospital but no answer so I'll ring again tomorrow but I have an appointment on Friday anyway so I'll just wait and go down then to see them :) Might ask about this new neb they want me to try rather than going down the IVs route seeing as my high temperatures seem to be coming down! Although my cough does sound pretty horrendous at the moment! Eeeek.

Fingers crossed for feeling better tomorrow :) 

Sunday, 11 November 2012

Poorly lungs

Here we go again! Thursday I had a tickly cough that just got worse and worse as the day went on, ended up going to bed knackered in the evening. But at 3am I woke up (and woke mum up too with my coughing!) and had the mother of coughing fits and could stop coughing for more than a few seconds till 6.30am! Everytime I thought I was just about to drop off I'd bloody cough again! 
Cough mixture in warm water,
night nurses tip to sooth
the tickly cough! 
At 8am I woke up to let work know I wouldn't coming in, thought I felt a bit warm and was completely out of it, confused, dizzy and though 'oh here we go' and went to find mum to tell her I was convinced I had a bit of a temperature. Checked it..... 38.3degreesC! Lovely! Rang hospital and they said that there wasn't actually a doc there! Dr Higton who was doing the clinic bit was on holiday and Dr Ho was doing the wards. Ahhh. In the end Judith managed to get hold of Dr Ho who said to take some coamoxyclav that I had in the cupboard and see how I go over the weekend and call them on Monday.
As the day went on I just felt horrendous, my lungs were not cooperating at all. I went to the supermarket with Mum to grab some things. But at one point I thought I was going to have to ask her to pop in a wheelchair to wheel me round as I was exhausted, my lungs were exhausted but then I was like 'no I've GOT to push myself' so I managed a little walk around Waitrose (despite coughing my lungs up whenever I went down the cold isles!)

On Saturday I still had a bit of a temp but it was a bit better than Fri and I was feeling a bit better in myself. It was my cousin Will's 30th birthday so we went to see the family and have a buffet and some drinks..getting myself ready took a bit more effort than usual but I dosed up on painkillers and had a little nap in the car on the way! 

Then on Sunday it was my Grandad's 81st! So we had a gorgeous roast dinner and we'd made him a red velvet cake too :) 

So now I'm at home and I'm just going to relax, have an early night & hope that I get enough sleep and my lungs feel a bit better so I can go into work tomorrow because I hate missing it!! Better give hosp a ring though & see what they want to do with me! Still got a very chesty cough & it feel very clogged up :( Naughty lungs! 

PLEASE hurry up with the decision for Kalydeco! This could make such a big improvement and I might not have days like Friday.  Hope you all had a good weekend xx

Sunday, 4 November 2012

1 year ago..

Good news is the chest pains I had last Friday went.. spent the weekend still feeling quite shattered & coughy but not as bad as Friday so that's good :)
Which meant I got to enjoy my half term!!

This time a year ago my mum had rushed me to hospital as I was struggling to breathe. They put me on oxygen, put a terabutalin pump into my tummy to help open my airways more, rushed through tonnes of fluids and IVs, sent emergency bloods off meanwhile my mum trying to stay calm through the whole thing! In the end I had the doctor, 3 nurses and 2 care assistants all in tiny treatment room trying to stablise me. Once I'd stopped giving everyone heart failure a room became free. Me being me said "oh its fine i'll walk the 10 steps to the room" so jumped out the wheelchair, walked 1 step and nearly collapsed! So they ended up wheeling me in! I stayed on oxygen for about a week and a half, the terabutalin pump came out after about a week but I was on 3 times a day IVs for a couple of months. My amazing mum stayed with me the whole time, all day and all night for the two weeks (to be honest, I didn't exactly give her a choice! hehe) so Dad bought a blowup bed so she could at least be comfy. I slept an awful lot as it was so much energy trying to breathe I was exhausted. Quite a lot of things I don't remember as I think I was just so poorly my body just wanted to get better rather than create 'memories' as such! My weight was so low they tried a million supplements with me..each one the dietician would go 'oh it tastes lovely' but she'd never had them so didn't quite understand that they tasted like shite! Every one of them made me sick so the doctor said there's not point in having them! 
I'm not sure about percentages but my lung function was about 0.6 litres.. the usual person is 4litres or more I think... So it really was BAD! I think quite a few people didn't realise how poorly I actually was as I wasn't on facebook much as I didn't have the energy but when the doctor tells you that your body was beginning to shut itself down, you know that's not a good thing!!!

In the end after two weeks in hospital they let me go home, but I had to have over 6 weeks off work and the first two weeks after coming out of hospital I was in a wheelchair when going round shops (although me being a pain kept trying to walk for a bit as I was determined but would end up giving in to having to sit in the wheelchair as my lungs weren't quite ready!)

Whereas this year, I've managed to visit my amazing friend Luci at uni, and go out for halloween.

I had a gorgeous afternoon tea with my mum on the 1st November which was the day I went in, we celebrated being healthier!

Only downside has been that I've been having horrible dreams where I'm in hospital and can't breath so wake up gasping, luckily now that 1st November has actually gone the dreams seemed to have stopped!

Little lungs aren't too bad at the moment, bit congested but holding up alright compared to last week!