Sunday, 26 August 2012

Gluey lungs

I'm due to come off IVs on what does my body decide to do? Get a cold! On the strength of antibiotics I'm on you'd think it'd be impossible to get a sore throat, but no! Woke up yesterday morning with a very sore throat and all sniffly but luckily this morning the sore throat seems to be on its way out.
You're probably wondering why this post is called 'gluey lungs'..that's basically the best way I can describe how my little lungs are feeling at the moment; like somebody's poured some glue into them..unless I've been inhaling pritt stick in my sleep I highly doubt that's the case! Luckily it's not ALL the time that they're feeling like this, I get a break for an hour or so here and there..especially if I've done my neb like a good girl! The DNase (which is used to thin mucus in the lungs) worked a treat yesterday, made me feel a lot looser for the rest of the day and evening so I'll probably give that a go in a while and maybe add in a hypertonic saline which is essentially very salty water which irritates the lungs (and me!) to make you cough till you're nearly blue in the face! However, because it's very salty it's a bit like breathing in sea water (I think a physio once told me it was 10 times saltier than the ocean or something) so it tastes VILE and the fact it makes you cough so much end up making me sick a lot of the time so best to do on an empty stomach! Lovely stuff.. better bloody work! :) I'm not doing that hard work for nothing! I popped to Guildford today to get a few bits, it's got a pretty steep hill..definitely noticed the struggle trying to get up it today. I could feel the resistance in my lungs as I was walking up it, like they don't want to take a big breath in. Silly things!

Anyway, last night I dosed up on some painkillers and went out for a night out with the girls which I haven't done in waaaay too long as I was in hospital and then had cannulas in which probably wouldn't be a brill idea to go clubbing with although if they were still in I would have though 'sod it', it's been too long! But it was Paddy's first night out. The good or possibly bad thing is with the IVs, the alcohol goes right to your head very quickly! Which is good in the sense it's a pretty cheap night out but you do have to be quite careful on how much you're drinking. Felt fine last night but this morning felt a little rough..but I discovered that my anti-sickness tablets that I use for when I feel really sick from coughing or IVs are a fab hangover cure! But here's a few photos from the night..

Have a lovely Sunday! xx

Thursday, 23 August 2012

Treat yourself day!

You've got to treat yourself once in a while, so Jess & I thought we'd take a trip up to London and have a day out in Knightsbridge treating ourselves to lots of lovely yummy things and doing a bit of window shopping (because when a jumper costs £600 you're not just going to 'buy a couple'!) 

We got on the train at Ascot, got into Waterloo and braved the underground..thank God it wasn't too busy or I would have freaked...

At 9.30am we went up to the fifth floor roof terrace in Harvey Nichols for a GORGEOUS breakfast..chorizo, tomatoes, beans and onion placed on sourdough toast with two eggs on top. Literally was one of the best breakfasts I've ever had! 

Then we had a browse around the shops, bought a couple of yummy treats to take home..looked at all the gorgeous clothes.
I nearly collapsed at the stunning shoes in Christian Louboutin..they were just amazing, but £850 for shoes.....I wonder if I could do some sort of study and say that pretty shoes make your lung function improve somehow and therefore we should get them on the NHS for health benefits? No? ;)

We then had a quick look in the usual Topshop, Zara etc but there really wasn't much in the shops at all! 

Harrods then called us in and we went to the chocolate bar there and devoured a huge chocolate fondue with champagne as well :) 

My lungs held up pretty well although walking up and down flights of stairs in Harrods left me a bit puffy!
However today I seem to be paying for it as chest is quite tight & I seem to be coughing quite a bit :(

We came home on the train, relaxed back at mine and sure enough it was IV time again! Then we went to the lovely Browns in Windsor for dinner which again, was just incredible! But for some reason my horrible cough has come back when I get into the car after coming out of somewhere and walking for a few mins in the air..very annoying cough that wont stop for a few mins! Go away!

Was an amazing day with an amazing friend..a much needed day to treat ourselves and to celebrate Paddy!

And what better to end the day and evening with a scrummy cocktail.. Passionfruit Daquiri !!

Tuesday, 21 August 2012

Paddy the port!

I couldn't resist giving my port a name.. I mean, hopefully it'll be there for a long time so I needed to christen it! And seeing as I'm half irish, what better than calling him Paddy! :)

Anyway, I popped to hospital this morning as the cannula was driving absolutely barmy, felt like chewing my own arm off it was so itchy! The lovely nurse Brenda decided that it was fine to access Paddy finally so after attempting with a size 16 needle which didn't quite reach the back of the port, we tried a size 19 and it fitted perfectly :) then woosh, saline flush and it was all up and working! I've already had one lot of IVs through it and just about to start up the second lot.
Today got me thinking. Popped to M&S to get some lunch..haven't been there in ages, the second to last time I went I had just come out of hospital in November and was trying to find a wheelchair (they didn't have any) so I struggled to walk round. Yet today, it was easy to walk around and not a problem at all, thinking about how I was breathing didn't even enter my head. Kind of just got me thinking about how much has changed over the past 7 months and the recovery I've made..and also how I certainly do NOT want to get back like that! 

The annoying thing is, I can't enjoy a deep relaxing bath as I'm not allowed to get Paddy wet whilst he's being I'm off for a shallow bath instead! Cannot wait until the IVs finish next week and finally go swimming :)

Sunday, 19 August 2012

Sunshine & happier lungs

The weather is absolutely gorgeous so what better than a BBQ! 

Starting back up on IVs, especially the meropenum, has made me quite sleepy so on Saturday whilst my dad and grandad painted the kitchen (we're getting a new kitchen fitted this week eek!! :)) I sat outside and sunbathed!

So in the evening we started up the BBQ which was perfect. Steak, prawns, chicken & bacon kebabs, pork belly, salad and potatoes..was completely stuffed afterwards!
And some yummy strawberry & pear cider to finish ;)

After only a few days of being on IVs my chest already feeling better which is good! Temperatures have seemed to settle down..even better :) 
So this evening I went out with the girlies for a meal to Prezzo which was delicious! Back home now to relax for the rest of the evening :)

Night all x

Saturday, 18 August 2012

Little lung gremlins..

After a horrendous night on Wednesday (really high temp, coughing, tight chested, couldn't sleep a bloomin' wink and felt so poorly) I was ready to go to hospital Thursday...but to my surprise I woke up & felt absolutely fine! Phew! False alarm..or so I thought!

Friday morning came and sure enough the little lung gremlins decided to play up again as they like to and I felt pretty rough! So thought it best to pop down to hospital (it's only a 1 min drive round the corner thankfully!) and they decided to pop me back on some IVs! 
Although I had the port op last week, they still can't access it just yet as it's still a bit swollen and sore so another week of cannulas it is! And I got a pretty pink one again :)

So I'm back on Meropenum (which a doctor once told me was "like bleach for the lungs, but BMW bleach" haha) and Ceftazadime - which unfortunately smells likes cats pee :/ So I pray that I don't spill it anywhere!
Luckily today my lungs are feeling a bit better; doesn't feel like there's a giant sat on my chest.

And because the weather is GORGEOUS today, we're going to have a lovely BBQ later on! Bought some strawberry cider to try as well!

Have a lovely sunny day all :) 

Thursday, 16 August 2012

Hello!! First blog :)

First blog so not quite sure how to write this without sounding like a tit so bare with me whilst I figure it all out! I’d seen a lot of other CFers writing blogs and thought I’d start my own off and hopefully help raise awareness about CF, organ donation and just let people know what it’s like living day to day with Cystic Fibrosis (CF) and Cystic Fibrosis Related Diabetes (CFRD).

Where to begin.. Well I’m 19 and was diagnosed with CF when I was around 3 months old because I just didn’t gain weight..I was tiny (and still am!). Throughout childhood I never had a stay in hospital, never had IVs (intravenous antibiotics) and was really quite lucky in the sense that I was pretty ‘healthy’..obviously had chest infections but everything was controlled with oral antibiotics.  When I was 17 I moved to the adult CF unit at Frimley Park Hospital who are absolutely AMAZING (but more on that later!). It was then that IVs where introduced as my body had got too used to the same oral antibiotics.  I had my first PICC line fitted, courses of IVs and everything went pretty smoothly :)

Then when I was 18 I had my first admission into hospital..and because I’m such a bloody drama queen I had to do it emergency style through A&E! For some reason I’d been really dizzy, getting worse as the week went on and ended up not being able to walk straight; it looked like I was permanently drunk! Luckily I was only in for a week, wasn’t feeling too rough apart from being dizzy and for my first hospital admission it went well.

Then November came which in all honesty was a shock to me.  As I’d been so well as a child I’d never really though about how ill I could become and kind of took an attitude of ‘that wont happen to me’. But at the beginning of November I was at home, at the start of the week I was feeling quite chesty and breathless and by the end of the week I literally could not walk 10 steps from my bed to the door. I was panting constantly, had no energy, couldn’t eat, had horrible temperatures and genuinely felt on deaths door.  So we went down to hospital who took one look at me and admitted me straight away!! Whilst they were doing the usual observations my SATs (oxygen levels) started dropping, my blood pressure was so low, my pulse was sky high and quite frankly as the doctor put it my body was ‘shutting itself down’. If anything I feel sorry for my poor mum and dad having to go through all that!! The doctors and nurses at the CF unit are just outstanding  and sure enough they calmed me down, sorted me out and after two weeks of being on oxygen and struggling to breathe I began to improve and they let me home. I had 7 weeks off work to build my strength back up..I was so weak from not being able to walk at all so it took a LOT of effort to get back again! And there’s no way I’m letting myself slip back to that without a fight.

Since then I’ve had two more hospital admissions, one just as a precaution to make sure I didn’t get as sick as November! And the other was only last week to have my first portacath fitted :) 

So that’s all the CF-y stuff out the way! A bit about me.. I work in a school for children with Autism and absolutely LOVE my job :) I have amazing parents and family, a wonderful boyfriend and fabulous friends who all support me through everything. It’s times like when you’re really poorly that you realise who truely cares about you! 
I’m a pretty bubbly person, always wanting to have fun (life’s too short!) and as anyone who knows me will back up, I can talk for England! And judging by this long post you can probably figure that out as well ;)

That’s pretty much it as far as a brief background and introduction goes! This blog is pretty much to share my CF journey with people who want to read about it as not everyone wants to hear about everything! I'm not going to sit here writing about how miserable life is with CF because I’ve got a bloomin’ amazing life with amazing people in it. Yeah CF gets me down sometimes, who wouldn’t get upset from time to time & everyone's allowed 'off' days when all you want to do is sit in your duvet and have a good cry..but life’s too short to sit and moan ALL the time about things you can’t change!

So smile and be happy :) and I promise not every blog entry will be as long as this! X