I'm such a tit sometimes..

Nothing exciting has happened lately healthwise, CF things seemed to be ok apart from the odd dodgy day, everything going well :) So what silly old me do..fall over my own feet and possibly break my wrist! I went to A&E and the x-rayed it but said that the scaphoid bone in your wrist (the one they think I've fractured/broken) doesn't show up on an x-ray for 10 days! So since last Friday it's been stuck in a split - I can't cut up food, pour a drink, do my hair..you don't realise how much you use your hands! I'm back at the hospital this coming Tuesday (the 4th) so I'm REALLY hoping it's healed otherwise it'll be 6 weeks in a cast; no work, no driving (I was meant to have my first driving lesson yesterday but had to cancel because of this!) and I'll be bloody gutted.

Sunny walk by the canal
with Luci

So pleaaaaase cross your fingers, toes, eyes and all that, that this just heals up in the 10 days! 
I wish there was some dramatic story to go along with it like I had jumped in front of a bus to save a child but no, I just tripped over my own feet..I'm such a tit sometimes!

On another note, Paddy had a flush today and Judith said would I mind having my photo taken being given Kalydeco from her and the pharmacist? Of course not! So my face will be in Frimley Hospital's magazine and our CF unit newsletter along with a quote that I still need to give!

Getting on a pedalo with a
broken wrist - oh I do love
a challenge ;)

Also, I had an ultrasound today on my liver, kidneys, pancreas, stomach etc as part of an annual thing to make sure everything's going well. I went in and the doctor said 'oh I remember you - I did your ultrasound last year!!' How bizarre! Although it's never good when they say 'was your liver ok on last years scan?' although luckily he kept going back over it and it was fine *phew*

That's about it - let's hope this wrist decides to heal up quick..I'm already annoyed with just the splint on!

Meningitis scare & Kalydeco!

Hiya everyone :)
Everything's been pretty good lately so I've not really had much to blog about CF wise! On slight issue has been on Friday. I came out of work and realised I had a rash on my leg, got mum to have a look and see what she thought and as we pressed it, it didn't disappear (not a good sign - most rashes go away when you press with a glass/finger!) so we went to the GP to pick up prescriptions and asked on the off chance if a doctor was available and luckily there was or we would have had to have gone to A&E! So we went in and explained to him what it was, showed it and said that I felt fine.  It is NEVER good when a doctor looks at a rash and goes 'oh dear, now that does concern me a lot..' haha. He asked how I felt and I said that I've been absolutely fine, just have a rash on my leg! He said that if I was a little kid he would have rushed me straight to hospital as it looks exactly like meningitis but as I'm old enough to understand when I don't feel well and that I WAS feeling fine he then calmed down as with meningitis I'd be feeling VERY unwell and also the rash would be spreading quickly, which it wasn't.  So he said to go home and relax for the weekend - he couldn't say it wasn't meningitis just in case I woke up on Saturday feeling ill in which case I'd have to go to A&E. I drew round it so I could see if it had spread but it was fine and now it's pretty much gone! 
Bit of a panic though when a doctor mentions meningitis! 

Today I had clinic for a Kalydeco check up :) It went really well and my lung function had gone up even MORE - to 2.3 litres, figures I haven't seen for nearly 2 years!!! Dr Higton was very very pleased and didn't really have much else to do. Shelly took some bloods for me and gave Paddy a flush.  My next appointment is for three months time - yes, THREE months! I haven't had an appointment that far apart for well over a year! 



Lastly, the month of May is CF awareness month.. I will probably do a blog on it in a couple of days so please share and if you follow me on twitter, pretty please retweet some of my CF ramblings or tweet it yourself with the #cysticfibrosis #cysticfibrosisawareness hashtags! Thank you :) 

Quick update - MRI scan!

Just a quick update to let you all know what I've been up to! The doc said the MRI scan for my leg pain would come through in 6-8 weeks but strangely a few days after my appointment I had a phonecall from a hospital in Farnham saying that they could do it this week.  
Yesterday (tuesday) I went there and was a bit apprehensive as I knew it'd be quite small - I've had CT scans and they're fine as it's not too enclosed and there's space but when they started to push me in to the MRI tunnel I nearly had a bloody panic attack as it really is tiny!! There was about 3-4 inches between my nose and the top of the tunnel.  It didn't help that I had to have something placed over my head so that made it feel worse.  They put headphones on me as it is pretty loud, plus I could listen to Michael Buble although the machine was so noisey I couldn't really hear it. At first I kept swallowing as I was worried but then the guy said you can't do that as it makes the pictures blurry.  But I managed to go in for the 30-40minutes, trying to keep myself calm the whole way through as I was so claustrophobic! 
It's quite funny because people were saying that I'd had a lot worse done to me than just a scan but it felt so horrible because it was so small - it didn't hurt a bit.  At least if I'm having a bronchoscopy I'm sedated and all out of it so I don't have a clue what's happening! Anyway, that's all I have to say really, just a short update on that! I don't have an appointment until 30th April so that's good :) 

So apparently I have 'unhappy nerves' & I'm going to be electrocuted..

Meg & I & the very
large cocktail

I've mentioned before about the mysterious leg pain that I randomly get and that for 7/8 years NO doctor has had a clue what the heck it is.  Just agonising pain.  Dr Ho referred me a while ago to a neurologist and today I had my appointment.  The doc seemed quite nice and we went through the usual background of my CF and medication list (which I'd printed off beforehand as I can't always remember the dosages of all of them!).  He did a reflex test on my arms and legs - for this I had to either push or resist with my arms/hands/legs/feet and he then pricked certain parts of them with a little needle to see if I could feel it.  He then used a two pronged fork thingy (technical term obviously ;)) to send little vibrations on my fingers and toes to first see if I could feel that but then I had to shut my eyes and tell him when it had stopped (when he held the two prongs it stopped vibrating). He also looked into the backs of my eyes. After all of that he said that usually women have a strong reflex in their legs compared to men, they aren't sure why, but mine were very strong so there could be a reason for that! 
All in all he said he also wasn't sure what on earth it could be! But he said he will book me in for a scan for my back to make sure that's okay but it takes 6-8weeks for that appointment to come through and also, has he put it, "we will electrocute you!" It's pretty much a test where they send electric shocks through your body starting low and getting higher to see how your reflex's react and how quickly it travels etc.  He said it can be quite painful but wont cause damage - so great, I'll be electrocuted! To be honest, I don't even care, I just want to get to the bottom of what the hell is wrong with my bloody legs!!!!!!

Meg, Me, Jess
Girls night out :)

I've had a busy couple of weeks as it was the last week of term at school (work) and then obviously it's Easter Holidays so I've been seeing friends and family.  I've got a few pictures of what I've been up to :)  I just with this weather would pick up.. it's the 4th April and it SNOWED today - that's just wrong! Please somebody send the sun to warm us up!
Have a lovely Easter break if you're lucky enough to either be in school or work in a school and if not, have a lovely weekend tomorrow! 

My little cousin Livvy & me on
Easter Sunday

"You know things are bad when.." Plus Kalydeco!

You know things are bad when the children you work with at school ask if you're okay because you keep coughing and tell you that you should probably go to hospital to get it checked out! Hahaha, bless them. At least they care!

Mine are usually between the 35%-63%. So when us
CFers say we find it hard to breathe, we really DO
find it hard to breathe!

Yesterday it was time for my 6 week sweat test to see if Kalydeco has reduced my salt levels - mine were pretty high before at 160! So I popped to hospital for the test which all went fine, I don't know the results yet but Judith said even if for some reason my salt levels weren't down it's fine as long as my lung function has improved which it had done..all the way to 2.1 litres which is 66% as my letter that I received today said.  
The only thing is that the past two weeks I have had this horrendous chesty cough! It wont go away - I had a high temperature for a week which then just disappeared and apart from feeling tired, I feel okay in myself..just a nasty chesty cough. So it's good that I'm feeling not too bad but need to shift this.  When I was at hospital yesterday they gave me some co-amoxyclav oral antibiotics for two weeks, so we'll see if they do anything although they're making me feel really sick (yay for antisickness tablets) and last time did nothing - but at least it's not IVs so I'm very happy to try them again! :)

I thought I'd see what my lung function was on my machine at home last weekend and it was down to 1.6.....shit. I'm guessing it's probably a temporary blip as this chesty cough is making me very tight chested and it's so rattly that I almost feel like I'm drowning in pleghm sometimes - lovely mental image for you there ;) But for some reason I've had a couple of panic attacks again..where the hell are they coming from?! The worst when it felt like someone was genuinely pushing down really hard on my chest, it wasn't just tight I actually felt the pressure for about 15 minutes and it was HORRIBLE and then caused me to hyperventilate and panic etc. Just need a bit of a slap don't I!

Me and Meg sharing a cocktail!

Last Monday I saw Alex for a while for a girly catch up with wine and malteasers! And then I saw Marianne & Meg for a loooovely Mexican meal out last week too which was delicious and lovely to catch up. And tonight Steph is coming over for dinner which'll be lovely so I better get cooking! 
And over the next few weeks I'll have my lovely uni friends coming back for Easter holidays! So I cannot WAIT to see them :) much needed long overdue catch up! Plus it means that I get Tom home for three whole weeks which is going to be amazing!

On 30th April I have my lung function tested for the Kalydeco tests so fingers crossed it's all back up by then! 

Fab lung function & then my lungs decide to throw a strop!

The buzz I felt from Kalydeco in half term was amazing! I haven't had that much energy for years..I felt like I could pretty much do anything and everything. I went back to work last week and because I'd been off for 5 weeks so ill I was absolutely knackered the first evening!  It was wonderful being back, I'd missed it so much and being able to get back in to the routine was great.  I even went swimming on the Tuesday with the students which was incredible..previously when I had gone with them it didn't feel as easy on the lungs as it did this time which is a promising step :)
This week started off amazing. I went to hospital on Tuesday for my 1 month Kalydeco check up - wondered if my lung function had increased at all.. In two weeks it had gone from 1.88litres to 2.1litres! I was shocked, that's the best it's been for well over a year! So in the one month that I've been on Kalydeco my lung function has gone from 1.5 litres to 2.1 litres, just incredible. 
I tried reducing the steroids to 5mg every other day but my chest started to feel the strain so rather than jeopardise the Kalydeco check ups and tests over the next couple of months I've decided to stay on 5mg of prednisilone a day which I really didn't want to have to do.. I HATE steroids, they make your face and tummy bloat and make your moods so up and down which is just a horrible feeling.  But I don't want to risk ruining my lung function so once I've had the 'you can carry on taking K' appointment at the end of April I will try reducing them again.

Saw this on a friends instagram!

The 'nay' part is that yesterday I woke up with an awful really sore and swollen throat, could barely eat or drink all day.  Although my lung function was fab so I wasn't worried about it spreading to my chest.  However this morning I woke up with an awful migraine, I was in bed till midday as I just couldn't get out as my vision was blurry and I felt so sick with it.  Great, another day off work when I've only just started back..I was NOT a happy bunny! It started to ease off in the afternoon which was great but then as it got to about 6pm I realised my chest wasn't feeling so great..I couldn't run up the stairs like I've been doing since I started K and it feels so clogged :( Literally within the space of like 2 hours I went from feeling pretty much fine to quite crap! My nose is also all bunged up so I can't breathe through there. My headache started to return, I felt like I was going to be sick and started to feel quite out of it. 
Thought it best to check my temperature and OH FAB it's high. Just felt like bursting in to tears, not because I'm really sick or anything because I know I'm not, but just because I was starting to feel so good and it feels a bit of a knock back down just as I'm getting used to feeling better - it would have been nice to feel good for more than 3/4 weeks before I started to feel ill again! I know that sounds so stupid as this is probably just a cold & shouldn't spread to my chest but hopefully you will understand where I'm coming from..it's not always down to how sick you are, it's just the fact you've worked so hard to get better & although you're miles better than you were it's a small knock back down and it's irritating more than anything - plus there's always the worry that it will spread to my chest and I'll end up back to square 1! I'm hoping it's just a few days of a shitty cold and my little lungs are throwing a strop and that by the weekend I'll be back to my bouncy self! :) 

Me & Steph in our week off!

Happy lungs = Happy Grace (& a psuedo love story!)

The title of this blog pretty much is what I have to say! My lungs actually are feeling quite happy at the moment :) 
It's two weeks ago today that I first started Kalydeco, the first week not too much difference as I was so ill beforehand I wasn't feeling any different. However, the past 4 days or so I've suddenly just felt like I have so much more energy! It's so strange, I don't even know what to do with this energy..I'm not used to it.  My lungs feel like they're not drowning in so much mucus, which is fabulous and such a good feeling. I've even managed to walk around Wisley for a couple of hours.  My lungs do tend to ache still at the back when I'm doing lots of walking, especially if it's at a quicker pace however I'm not getting the breathlessness which means I can afford to push myself further :) I'm hoping in the next few weeks to start swimming after work a couple of days a week, build up my stamina with that as I always LOVED swimming when I was a child and when I took my GCSEs I left the club I used to belong to so I could focus on my exams.  

On my annual review analysis letter it said my Pseudo growth is now light which I reckon is down to the Cayston neb as I hadn't started Kalydeco then! Which is fab.  If you've been reading my blog a lot, apart from deserving a medal for sticking with me, you will know that Pseudo is basically my lungs best friend/enemy.  Pseudo just wants to be friends with my little lungs but unfortunately they just don't feel the same way and I think they are starting to go their separate ways. I probably wont ever get rid of Pseudo as my lungs are classed as being colonised with it as I've had for years now. But as long as I can keep it to a light growth and try to reduce any Pseudo flare ups then we can try to manage to live side by side!

Another amazing thing to tell you....my morning cough has pretty much disappeared!  If I had a penny for the amount of times I would wake up either in the night or especially in the morning coughing for a good 20-30 minutes, struggling to breath and half the time resulting in me being sick purely from the amount of coughing I would be the richest person in the world! Over the past week this horrible annoying cough has gradually left so yes I still have a cough in the mornings but it's a little one, just for my lungs to let me know they're still doing their job ;)

The other night I did have a couple of panic/anxiety attacks when I was in bed, luckily nowhere near as severe as they used to be.  Haven't had them for AGES and suddenly one appeared from nowhere..I'm not even sure why! My breathing has got better, I'm feeling better and I don't feel that I'm particularly worried about anything.  I know when I had my annual review they said my anxiety score was quite high but I don't know why I would have a mini panic attack over nothing! Anyway, it was so small it kind of feels pretty insignificant now.  One happened the night after too but again, nothing like I used to get where I would sit down hyperventilating, shaking and crying and only my Mum could calm me down and help me to breathe properly.  This I managed to just calm myself down within minutes so I guess it may have been one of those things! I've told my panic/anxiety attacks before that they're not welcome so they know where to go ;)

LASTLY! Sorry for going on for so long. I had clinic today, and in two weeks of being on K my lung function has gone up HALF A LITRE! It's now 1.8litres which is around 60% :) That's amazing it's gone up that quick, I can easily loose a litre in that time but it usually takes me so long to gain that back!  Dr Higton was so pleased with me.  I asked about stopping my steroids, and she said to have 5mg on alternate days for two weeks then stopping.  But if that makes me feel dizzy I'll go back to normal and possibly try an even slower way of ramping them down and getting off them.  I've been on an up and down dose for a year now and they said when you're on them for a while your body stops producing natural steroids so they may need to help it by doing an even more gradual decline but we'll see how that goes.

It's half term this week so I'm making sure I do lots of walking to exercise my lungs, going to see a couple of friends and then Tom at the weekend and FINALLY back to work next week, cannot wait to go back! Very excited! 

That's all for now folks ;) 

One week on Kalydeco!

Hey everyone!

My first full week on K and after a few days I was wondering what all the fuss was about as I still wasn't feeling any different to how'd I'd been the past month (although maybe I was thinking miracles would happen!) I was still getting high temperatures, and feeling breathless and coughing so much that it was making me sick half the time. But then I did remember that the nurses said the first week on K can be rough and as I'd been feeling so poorly the past month anyway I don't think I'd really noticed the difference! 
They said about the headaches/sinus pain you can get, especially for the first couple of weeks. After a couple of days I'd had nothing so was getting a bit cocky and thought maybe it wouldn't affect me that way then BAM at the weekend I was in agony! Plenty of nurofen, paracetamol and cooling patches for me! 

Today is the first day I've actually thought 'wow I might be able to do things, go for a walk' and have felt like I've had a lot more energy and focusing less on breathing. So let's hope K keeps on doing it's magic and hopefully by the end of this week I'll be absolutely buzzing and my lungs will do what they're told! I've got a check up next Tuesday to see what my lung function is doing..although I'm feeling better in myself and I'm not coughing as much, I don't think lung function would be too good as if I do a deep breath in I cough and splutter! But we'll cross that bridge when we come to it :) 

I still managed to see some family to celebrate mine, my dad & Auntie's birthdays which were all at the beginning of Jan but because of snow and then a few other things we couldn't meet up until now! However I did slap on a smile as during the meal my lungs suddenly became really sore and I felt so shitty with the temperature but never mind, carry on as normal!
Also, I'm really missing work :( Cannot wait until after half term when I can go back! 

Yay for beginning to feel 'normal' again! And as it's pancake day I'm off to go and cook lots of yummy pancakes to eat. Hope you all have some scrummy pancakes too!

Day 2 on Kalydeco & a mini 'get it off your chest' session!

It's only day 2 on Kalydeco so I wasn't expecting miracles, everything has been a bit up and down really! I took the 1st dose on Wed night but today is the second full day on K. 
Yesterday I woke up (I must admit I had fingers crossed I'd wake up and suddenly feel amazing!) but I had a temperature of 38.2 and my lungs weren't being cooperative either so I came down stairs and laid on the sofa and mum got me painkillers, and nebs and everything. I still wasn't feeling hungry but managed some lunch and then just fell asleep for about 3/4 hours as I was just exhausted! As the evening came I felt better. ALWAYS the way lately, mornings and early afternoons I feel awful and can't do a thing and as late afternoons/evenings come I feel better. I went and relaxed in the bath, nothing better than having tonnes of deep baths after your gripper has come out...only CFers know the true satisfaction of a post-IV bath! Hehe :)
This morning I woke up, took my Kalydeco tablet at 7.15 and went back to sleep for a while. Did my nebs, temp was 37.7 so took some nurofen as those seem to be the only thing to help bring my temperature down. At about 11ish I realised I was actually feeling a lot better all of a sudden..so I had some lunch, still not very hungry but again managed to eat, and thought I'd try some of my new pilates DVD that I bought..realised how unflexible my legs are, I can't touch my toes or sit up straight with my legs flat, the knees rise up and bend! So if anybody reading this has any tips to make legs more flexible please feel free to leave a comment, tweet me, facebook me or anything! It was good though nevertheless and a nice little workout! 

I'm really hoping that I continue to feel better and keep improving but I always think that in the evenings and the morning comes and I feel awful again so we will have to see what tomorrow brings :) 
I am really sad though as I've had to inform work that I wont be able to come back until after half term (which means next week off work as week after that is half term) which I am just gutted about, I miss the students in my class and the staff loads, I would do anything to go back :( but with me feeling so up and down I can't afford to go in and make myself ill. Even if I am starting to feel better, going out for an hour to have a look in a shop or whatever really tires me out so I need to build up my strength and endurance after spending a month so ill! However I do feel like I'm coming out of the clouds now and heading back to feeling better so let's hope it continues and Kalydeco does its magic ;) It's hard to know if I'm starting to feel better because I've been ill & it's time to feel better or if K is working or both!

I'll keep you all updated with how I am over the weekend and next week. I really hope Kalydeco works soon and I can finally look forward to things, I can make plans without being scared that I'll have to cancel. That's one thing I hate about CF is not being able to plan for things..not being able to book holidays for the Summer as I just don't know how I'm going to feel. And when I'm poorly I can't even make plans for the next few days as I just don't know what will happen and it just hurts to not know what to future holds, everyone seems like they can plan for everything in the future whereas I just don't know what will happen and to be honest, I do think about that a lot as it doesn't just involve me, it affects my family, my closest friends and my boyfriend. But I keep going in the hope that my lungs decide they do feel like working properly and Kalydeco will help stop me feeling this ill as often and the amount of IVs will reduce which mean I can plan for things and I can look forward to my future, not dreading what will happen the older I get, which is what it does feel like sometimes. The unknown. That's the scary part. One person once said to me 'just have a lung transplant and you will be cured' My mouth just dropped right open. Do they not realise HOW sick you have to be to get on the transplant list and even then the painful wait? I know people on the list and I've read blogs of those who are on the list or have had their transplant and you just wouldn't wish that on anyone. PLUS it still does not mean you are cured?! I think people in schools need to possibly be educated a bit more, but also think before they speak?! Obviously lung transplant is a thought that comes up a LOT in my head, especially with how I have been lately, unable to walk up the stairs, struggling with every breath. I know that I am not sick enough often enough to warrant being on the transplant list, no way. But when my lung function is 30% I know that if you are like that for 6 months you can be assessed for transplant. Mines only been like it for a couple of weeks, and then 40% and slowly going up. I know I'm a long long way off from that option at the moment but it's a terrifying thought that I've just sort of come to terms with that maybe one day that will be my only option and if it is and I am lucky enough to receive someones lungs then that is what is meant to happen. I am however hoping with Kalydeco that possibility is going to be lowered, or at least put off for a long while! 
Anyway, I'm very sorry, sort of went off on a tangent and mini outburst there. 

Thank you again to anyone who reads this, I really appreciate the fact people take time to sit & read my blog :) and to those who share it on facebook and twitter too :)

I HAVE KALYDECO! Plus hospital appt & dodgy oxygen levels!

Hello lovely readers, fellow bloggers & CFers!

FINALLY I have amazing news and I have got Kalydeco! I was planning on getting it tomorrow but I had a hospital appointment today anyway, did the exercise test as the physio had time & therefore they said I could leave today with K! 

So yay! I must say though before a million people ask, there is a link on my Kalydeco page which explains how it works as thats better explaining it than I am. It is NOT a cure, I've had quite a lot of people say that now I'll 'be cured' or 'wont have meds' anymore and that isn't the case. Yes, this little blue tablet is bloody amazing and does mean better lung function, stable weight, less time in hosp or on IVs but I still need to do ALL my meds, nebs and I will still have IVs, get sick and be in hospital. K just means that hospital and IVs will be less often and the scarring from infections will be less :) 

As the tablets have to be 12 hours apart I need to fit it in with work etc so my first dose will be 7.15 tonight! Very excited :):):)

My hospital appointment on the hand did not go so well in some ways. My lung function had gone back down - boo hoo :( - and for some reason my SATs (oxygen levels) decided to muck around..they were 92 at rest (mine are usually 99) so was a bit worried, as I did the exercise test they started dropping to mid 80s. I spoke to Judith & explained that I get awful headaches when I wake up in the mornings or if I've had a nap during the day..she said hopefully K will sort it out but if in 2 weeks when I go back it's still the same - or gets worse in the mean time - they might keep me in for an overnight observation to see what my SATs are doing when I'm asleep and also when I'm walking etc. Fingers crossed it sorts itself out please! :)

They said I could come off IVs as after a couple of weeks I seem to plateau, so Dr Higton said lets try a break, K might kick in a help, if not I'll go back and try new IVs/stay in hospital for a bit.

So there's my exciting news, finally joined the Kalydeco Club ;) I'll be updating my blog quite often probably over the next couple of weeks on how I'm doing so keep checking back if you're not bored of all my ramblings yet!

Lots of love

Blog Makeover, IVs & Kalydeco!

As you can see, my blog as had a makeover! I was fed up of the old layout and finally found out how to do a few things to make it look a bit nicer :)

On to the important stuff! Last week I began to feel a bit better, however still had high temperatures and was struggling to breath when walking around. Over the weekend it seemed to improve which was good. I went back to hospital today with the hope of coming off IVs but no such luck! My lung function was pretty much the same as last week so Dr Ho said one more week on IVs should do it as although I've had two weeks on the Coly I've only had one week on the Timentin so he reckons that's starting to work but if we stop it now, I might go back to how I was and we certainly don't want that! I am annoyed as it means it's three times a day so I can't go back to work :( However the children in my class sent me lovely letters and pictures saying they missed me which made me burst in to tears! I'd had a bad morning and that had cheered me up completely! :) I can't wait to go back.

Even BIGGER and BETTER news, I had my sweat test done today and bloods in preparation for Kalydeco! They're hoping either next Wednesday or the Wednesday after I'll be able to start Kalydeco :):):):):) Very exciting, cannot wait. So watch this space with my updates ;)

CF picked the wrong lady to mess with ;)

Hey all! 

Despite all the tissues, coughing, phlegm, IVs and nebs I actually think I'm on the mend! I went back to hospital yesterday and they popped me on another IV as I'd reacted to 1 so stopped it and its not enough to only be on one IV! So stated on the Coly but now I've started Timentin which I haven't had for over a year so I'm hoping it'll do some good :) 
Only problem is the Timentin is three times a day which is a pain as I'm now also back on my month of Cayston (neb) so I've got tonnes of things to do, how exciting.. I'd do anything to go back to work, I miss it loads and I can't watch anymore day time tv or I'll cry! 
My lung function had increased when I went back yesterday, by half of what I had lost which was a surprise. I am determined to get back the other half by next Tuesday and come off IVs! Still getting quite breathy when walking about and doing things but I am able to do more which is a promising sign :) 

So lets hope my next blog is me coming off IVs! Apparently Kalydeco should be coming in the next few weeks so keep checking to see if I've got if and how I'm doing :) I need it now so much, it's so close I can almost touch it..just needs to come quicker! I'm very impatient ;) 

I've made a list of things I want to achieve this year, especially after Kalydeco when I will feel more well to achieve some of them. Some are silly little things and some more important so we'll see what happens and if I can manage to do them all! 

For the next week I'll be doing my 6+ nebs a day, IVs 3 times a day, physio (which I really do need to step up on) and hopefully this chest infection will realise its not wanted and will leave! 

Struggling

This past week has been such a struggle for my poor little lungs. I've barely been able to walk around the house and even the small tasks of having a drink or eating leave me out of breath. Tuesday I was at hospital which I explained in my previous blog post and went on to IVs. Yesterday morning I woke up with a VERY high temperature of 39.4 and was just shaking and shivering, being sick and a complete mess. Mum stayed off work to look after me because my chest was so bad I couldn't get drinks or my neb or anything. 

I took the usual nurofen and paracetamol but it took 4 hours to get my temperature to around 37.5 which is still up a bit. For the rest of the day and night it just wouldn't stay down and I swear I've not felt this bad since I had my awful spell in Nov 2011 which I've blogged about before. 
My lungs feel exhausted, my whole body aches and although I'm a positive person it's sometimes hard to always stay positive when you feel this bad..surely everyone's allowed to moan sometimes?! 
Luckily I've had some lovely friends texting me and calling me as daytimis so boring I might go mental! Everyone always says a pj day laying on the sofa doing nothing is ideal but I swear when you have no choice it's horrible, I'd do anything to be going out!
And to make matters worse there's lots of snow now so I'm praying Tom can get home from uni okay and the trains aren't cancelled so I might get a chance of seeing him this weekend (we do 1 weekend at his uni and 1 back at home). If I can't see him ill probably end up crying! Already been in tears this morning because I can't see my family tomorrow (we'd planned a meal out) and I'm just so fed up of feeling so crap! 
I rang hospital to tell them I'm even worse than when they saw me on tues and Judith said ideally they would keep me in but there still aren't any beds :( so if I feel worse I have to go to A&E. I have a hospital appointment for Tuesday so we'll see what happens then. 

Anyway, I'm off to do some more relaxing as there's nothing else to do! 

IVs & narrowly escaping a hospital admission!

So on my annual review I was starting to feel yucky. Over the weekend it's got a lot worse..in the mornings it's been so bad, to the point where I've been having to have a break half way down the stairs as its so much of a struggle, really high temperatures and all achey. Mornings are always the worst, feels like my lungs have just given up and last night I was thinking I just give up..I do all my treatments but still end up like this. But then I thought no that's not the attitude I usually have so I focused on the fact I'll be getting Kalydeco soon :) 

I popped to hospital today as I felt so bad, had to get mum to wash my hair as I just couldn't manage. Got to clinic, sats were a bit down from last time but still 96 which is okay. I'd already had my atrovent which opens me up a lot, and considering I'd had that which makes a big difference my lung function was still only 1.16 which calculates to around 33% which isn't good! That's down a whole litre in just two weeks! 
My temperature was up to 38.9 which is very high so that made me feel quite loony as it always does! 
I saw Dr Higton who said she would keep me in but there are no free beds at the moment! So she said to go home on IVs and go back in a week to make sure they're doing good! Unfortunately all the IVs that the bacteria weren't resistant to are IVs I'm allergic to! Seeing as tazocin only gave me a high temp at day 10, we thought we would try it again. And colomycin gave me numb hands and face but that can be a normal side effect so she said to have a half dose of that and see how I go!

It's just so tiring having to breathe, any energy I have I end up using on that or thinking 'I feel better, I'll pop out for half an hour to waitrose to grab some food' and end up knackered! 

I've got to have time off work as my chest isn't up to doing much which is horrible as I hate missing work as I love it but luckily my work are so understanding...I'm very lucky! :) 

Anyway I'm off to have a sleep as I'm knackered! Lets hope these IVs do the trick! 

20th Birthday & my Annual review

First of all, yesterday (9th Jan) I turned 20! I made loads of chocolate cakes and rice krispie cakes to take in to work which ALL went. 
My parents got my a bracelet from Tiffany & Co, but because my wrists are so small it had to be sent off to be made smaller so it wont come until 23rd Jan so I'll have to wait for that one ;)

On to the main thing, my Annual review was today. And on a day where I would have loved to have been at my best I feel horrendous! The past couple of days I've had a high temperature, body aching all over, coughing tonnes and just struggling to walk about as much..especially walking up and down stairs is more of a challenge!
This morning my lungs thought 'hey lets really throw something in the mix for hospital and make her cough up blood!' so that was thoroughly enjoyable..not. Luckily it was only streaks and not a full on bleed!
I went to hospital and saw Judith who filled out some bits & bobs. Rada did all my obs..sats were a little squiffy but then went up to 97 so that was ok. Heart rate was pretty fast but it always is when I have a high temp! Filled out more questionnaires about my health in the past year etc. Had all bloods done and a chest xray too. I must be poorly, I went up in the lift..and I HATE lifts! But there was no way on earth I could have walked up those stairs!

The dietician came in..low & behold she was really nice to me! I reckon maybe someone had had a word with her as I said I was upset last time as they nag and nag when I need to put on weight but when I've managed to put it back on and keep it on, they never praise or come to see me. So she walked in saying how happy she was etc... mentioned about in the future a peg would be good if I ever needed one as I cannot stand the supplements but we'll cross that bridge when we come to it, last time I managed to force myself to eat in the end and I really don't fancy a peg.

My physio said she wouldn't bother with the exercise test as I just couldn't do it. Talked to her and she gave me stretches to do for my chest and back as I was saying I get back pain and my posture is really bad. She also suggested getting a pilates dvd which I wanted to do anyway :)

Judith had another chat with me, all about the future and stuff. Then everything got a bit emotional when she said 'do you think about the future' and I said 'yes quite a lot, especially since Sammy passed away' and ended up bursting in to tears and being a blubbering mess! 




Hopefully by Monday I'll feel better or I'll be ringing hospital! 

Happy New Year and a trip to A&E!

Happy New Year to all my lovely followers and blog readers :)


I'm hoping 2013 will be a healthier year, especially with the news that Kalydeco is being funded as from today! I've just got to wait now until my hospital gets hold of it and then finally I can begin taking it :)


After all the excitement and rush of Christmas and New Years my body thought it fancied some attention so this evening during my IVs it decided it would react..giving me swollen tingly lips, numb hands, red rashes everywhere, really itchy and then my lungs joined in and it was harder to breathe. I was just going to sit at home and see if it passed but it got worse so mum took me down to A&E. They rushed me through and were really good; the triage nurse gave me an antihistamine and did all my obs.. sats were down a bit but nothing major. By the time I saw the doctor I felt better so he said to let CF unit know tomorrow morning and take some antihistamines for the next day. Fun fun fun, I like to cause a bit of drama now and again ;)

Hamster cheeks, a thought for Kerry & gripper problems!

Hope you all had an amazing christmas :) 

On Christmas Eve mum & I thought we would let off a purple sky latern for my friend Sammy who passed away a few months ago. We reckon she was having a laugh and thought 'I'm not having you two getting upset on Christmas eve' because the bloody latern wouldn't fly! It lit, nearly set fire to itself and then just went out! She must have been having a right laugh up there! 

I'm especially thinking of a young lady I and many CFers know called Kerry who is very very ill at the moment. She is currently waiting for a lung transplant & with a lung function as low as hers it couldn't come any sooner. Kerry has defied the doctors and made it through Christmas but please pray for her and pray she gets the call she so desperately needs. And PLEASE join and encourage others to join the organ donation register, it's so important to help save lives. The more organs to donate the more lives we can save.

I've been on IVs for just over a week now. I guess it's my fault as I said a while ago 'IVs never make me feel too bad, it's usually the infection that gets me' so this time my body thought 'hey let's make the IVs make you feel like shit!' 
Within a few days of being on them my cold went but they made my chest go really tight and even on 8mg ondanaetron which is the most I can take (antisickness) I still felt like I was going to hurl & my appetite wasn't as good. It makes my moods so up and down too which I hate!
I go back to hospital on Thursday & hopefully the two week course of IVs will be over and I can stop them.

Being on these lovely higher dose of steroids means the return of the hamster cheeks! 
I had to have my gripper changed as you need a new one every week when on IVs...unfortunately this one took 4 attempts to do! First go and fluid went in the wrong place and it really hurt, then another go and another when it all began to swell up so Judith said she would leave it for 20mins and come back. Luckily 4th time it was fine :)

It was return of the panic attacks on Christmas Day, luckily mum was there to calm me down as she always does :) couldn't be without here, gets up with me to help with IVs at 6am, superstar mum, love her lots. 

And with a new year brings Kalydedo! Yay. 
Have a lovely new year xxxx

Time for a boost of IVs

I thought I'd finished earlier but no, I'm back again ;) 
Woke up with a temperature this morning and still felt rotten so thought I'd ring hospital, ended up going down there this morning..wow they were so busy! SATs (oxygen levels) were ok, blood pressure ok, lung function was even ok so I was thinking 'oh gosh I've probably come down here for nothing!'
Spoke to Dr Ho who said my infection markers from the blood test that he took on Tuesday were starting to go up..we considered me starting some oral antibiotics but most of them make me sick anyway so he said the best idea is to just give me a boost with two weeks worth of IVs before this spreads in to a nasty chest infection! All my throat glands are swollen..one is a pea sized lump in my neck which kind of makes me feel sick every time I touch it!
Started up on Meropenum and Ceftazadime twice a day so hopefully they wont make me feel too bad..had one dose and I'm already feeling quite tired from them. Stocked up on antisickness tablets to that's good ;)
I've got a few sore lung pains here and there at times so will just keep on top of painkillers as every time I sneeze or cough it makes the pains shoot!
Also the AWFUL leg pains I get have been bad again so Dr Ho said he'll refer me to a neurologist who will hopefully be able to find some answers as he thinks it may be a nerve problem! 

Anyway, for hopefully what will be the final time before christmas, Merry Christmas everyone..have a lovely time, drink lots and be merry! xx

WE HAVE KALYDECO!!!!

Yesterday evening was such a blur.. mum & I doing a small bit of christmas shopping in Basingstoke, I was trying a jumper on and mum was on her phone. So I come out of the changing room and she called me over and said 'double check I've read this right..'
As I look down to her phone I can see in writing that they have agreed to fund Kalydeco!!!!!!!! I was in shock and had to read it about 5 times before I could even begin to believe it.. we did not think they'd agree it at least until the new year and even then we expected we'd have to fight!
At the moment they've agreed to fund it in England, so we still need to fight for the rest of the UK to get Kalydeco but whey what a start..I'm sure now it's been approved in England it'll follow suit to be approved everywhere else!

I still can't quite believe it, even as I'm typing this I just want to ring hospital and be like 'are you sure?!' 
So last night we thought we'd celebrate with a gorgeous bottle of pink champagne!

However, Kalydeco is not a cure.. we STILL have CF, we'll still get chest infections, we will still need IVs and stays in hospital but Kalydeco means that these will be so less frequent than they are now as our health will be much better! It increases life expectancy. It's a massive leap forward and the first of its kind but before I get people going 'so why are you still taking tablets and going to hospital' it isn't getting 'rid' of my CF! My lungs will hopefully just become a lot happier now than they have been :)

Hospital on Tues I was fine, tuesday eve I began to feel a bit poo and now I've had yesterday and today off work because I can't manage it :( which I hate, I want to be at work..plus its the last week and today I'm meant to be having christmas dinner with the students and I'm missing out on that. And I'm missing out on a night out tonight too..that is one thing that really gets to me, when I have to cancel plans because I'm too unwell but now with Kalydeco hopefully I'll rarely have to do that. 
So I'm relaxing today, popped a dvd on and I'm laying on the sofa with a blanket in my pjs. I spoke to hospital but I'm undecided on whether to go and see Dr Ho or not..Judith said I could go down at 11.30 but I don't want to seem like I'm making a fuss if this is just a nasty cold and doesn't go into a chest infection..however I am coughing more today and it feels like I've inhaled glue! And the last thing I want is to be ill over Christmas so I might see how I go over the next hour and then decide whether to tough it out or pop down!

Anyway, like I've said.. I am still in shock. I popped a status up on facebook last night & the amount of support I've seen has been wonderful, even people I haven't spoken to for years which I think is lovely & will hopefully raise more awareness to help us get Kalydeco for the rest of the UK.

Kalydeco is being funded from 1st Jan, and Dr Ho said it takes around a month for it to get to us as they need funding from other places or something so I probably wont get my first tablet till the end of Jan but I WILL be updating my blog about that! Very excited for that little blue tablet :):):)


If I don't post again...

MERRY CHRISTMAS :) xx