Holiday!

I'm back from Ilfracombe, we had such a lovely time.....visiting lots of places, paddling, boat trip, lots of tasty dinners out and cream teas!
Safe to say I was knackered every night after being out during the day but it was worth it and there was no way I was going to let my lungs not let me go out and enjoy myself, no matter how tiring it was! Mum did make sure we had plenty of tea/ice cream/cake breaks so I could get some energy back (always a good excuse for some yummy food!)
I won't go on and on with a day by day synopsis as I'm pretty sure most of you will fall asleep half way through! I just want to go back, such a beautiful place :-) and the sea air does make you feel better, my lungs feel heavier back home - maybe I could get a holiday home by the sea on the NHS ;)
I've got a week left and then I'm back at work again. This summer has gone so fast but I think spending the first week in hospital, the second week still on IVs at home and the third week recovering I feel like I've wasted some of it - but never mind.
I've got an appointment with the neurologist soon about my silly leg pain, all the test results came back ok so I think it's going to be either 'you will have to put up with the agonising pain' or maybe some more tests.
Also, I still need to do my exercise test for the Kalydeco check up as I was too poorly at the beginning of the month to do it.
Let's just hope I can keep myself off IVs and out of hospital for a while! Fingers crossed :-) have a lovely week!











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Location:Holiday!

Tablets that are meant to make you feel better, make you worse!

Last week Dr Ho re-started me up on domperidone in the hope it would stop me feeling so bloated all of the time. It hasn't. In fact, instead of helping its made me feel really sick and has given me awful acid reflux, oh the joys! I wondered why all week I had felt so bad. Then last night it was just so so painful, just felt like I'd swallowed acid. I'd already had my omeprazole and ranitidine which did nothing so in the end the only thing that helped was to drink lots of milk! Today I didn't take any domperidone and so far *fingers crossed* I haven't felt too sick or had bad reflux..hurrah!!




I'm off on holiday tomorrow which'll be lovely, off to Ilfracombe for the week. Very excited, I can't wait :) The only thing is the realisation of how the past two and a half years have affected me - last time we all went on holiday for a week I was 15/16 and in great health. Since then I've had 1 near death experience and a few really poorly patches..I'm not feeling too bad at the moment but still notice how tired I'm getting after a day out or needing my extra nebuliser if I've been doing more walking than usual so it will be interesting to see how I feel on holiday. The good thing is that I always feel better by the sea..good salty air is great for the little lungs!
I've packed everything....I think! There's always something you forget and I'm awful for checking everything a thousand times!
I have fab news too..Katie and Kirstie are doing well after they both received a double lung transplant :) two very strong girls.
Had a lovely tea and yummy cake evening with some of the girls yesterday, was lovely to catch up!
Hope you all have a lovely week and I'll blog when I'm back!




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Clinic, transplants & a well deserved holiday

My IVs finished Wednesday evening so straight after mum pulled the gripper out I jumped straight in the bath - nothing is nicer than a post IV bath! Tom came with me to clinic on Friday morning..my obs were the same as before, lung function was down a bit though but dr ho said he wasn't too worried about it but to keep an eye on how I feel & if I start to decline to go straight back. He did mention about steroids again if my lung function does deteriorate and I briefly said my concerns..that I was so low when I was last on them, even just 5mg, so he said we can cross that bridge if we come to it. They're so good there, never put your feelings to one side :) so now it's just a case of carrying on as normal and keeping an eye on things. I keep getting patches where I feel crap but it's not all the time luckily.




Two very amazing girls both received a double lung transplant yesterday! Such fabulous news :) Kirstie had a dbl lung tx 2 years ago but recently suffered with chronic rejection and deteriorated very quickly..they had such a tiny window to find lungs and by some miracle and the caring nature of a donor and their family Kirstie managed to get a new pair of lungs! And Katie who is only 14 received her dbl lung tx too yesterday! This is why joining the organ donation register is SO important, to give people another chance at life is just incredible. Please please please go on go the organ donation website and sign up..it takes two minutes.
It always makes you think, you have no idea if and when you'll need a transplant. I could need one next year or 20 years down the line or I could never need one. You just don't know but when you see people as strong as these two girls to through this it makes you feel inspired & brings the cf community together. I try not to think too much about the future, I know how it feels to be that sick when my lung function was 16% and I was just lifeless..somehow I came back from that but it does make me wonder wether if that happened again whether I'd get back from it or if that would be how it's going to stay. You never know what's round the corner, just always be grateful for the ones that love and support you because you never know when you'll need them the most.




I'm still feeling pretty tired from my hospital stay, IVs and then trying to do too much when I came out of hospital but I'm doing what my dr ordered and going on holiday next week. Mum, Dad and I have booked a stunning apartment in Ilfracombe, Devon. Very excited, it'll be lovely to just get away for week :)
Please keep Kirstie and Katie in your thoughts whilst they recover from their transplants :)




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Why is nothing ever simple?

After I spoke to Dr Higton about not going on steroids due to how low they made me feel they suggested using a steroid inhaler instead as it's absorbed in a different way so you wont have the same side effects. I'm now on Symbicort which seems to be working pretty well! Wednesday afternoon they said I could be discharged from hospital on the provision that I "don't go wild" - they know me too well, usually try to do everything the minute I come out of hospital or am on IVs! The nurse said to pop back at 4pm to have the last IVs of the day as home delivery IVs don't deliver in time for the morning dose. So I popped back and they had to change my gripper (the needle and tube that you put into the port to administer IVs). First flush was ok, then first few mins of IVs were ok but it stopped & then wouldn't flush again. Tried a second and third time; it still wouldn't flush so Sweety said she didn't want to do it again as it was getting really painful and I was pretty stressed. So I came home for a bath, tried to relax as best as I could but had no idea if Paddy had turned or was kinked. Why is nothing ever simple with me?!
I went back this morning, dreading what would happen - Judith said we'd try it one more time and if it didn't work we'd then come up with another plan. She put a gripper in, flushed it fine and plugged in some IVs..they worked fine. HURRAH!
Judith thinks the first gripper went in wonky and therefore some fluid got in to the tissue so it swelled a bit meaning the other grippers couldn't get in to place properly. 

This lot of IVs are making me feel quite sick and completely shattered. I'm having a great sleep at night, sleeping during the day and then still tired. Plus they keep making me want to cry all the time, even when I'm happy! I think anything, even a cute little dog, will make me burst! Plus the panic attacks come back..just horrible.

I'm back to hospital next Friday to have a check up & hopefully stop the IVs. I'm managing to get out and about a bit to get exercise for my lungs, plus I really want to go shopping so tomorrow mum & I are off to Bicester Village to have a look at their lovely outlet shops...at least with mum I can have a break after every shop if I need to without worrying that she's going to get annoyed! :) She came in everyday I was in hospital to sit with me & helps a lot with my IVs when I'm too tired or feeling to ill to do them. Words can say how much I appreciate and love her.

Lets hope for a good drama-free week! 

Struggling for breath

Short blog guys as I'm feeling pretty sick and don't fancy vomming all over my mac! I had a really bad night last night just struggling and fighting to get a good enough breath in. Even night nurse Sue who is always very calm was getting concerned. We checked my sats which were 99 unless I spoke and then they went down to 96. My lungs feel like they need oxygen yet the machines still are saying no - it's such a confusing situation. 
I spent a good couple of hours really struggling; it was just so scary finding it so hard to breathe. In the end it was very tiring and I ended up falling asleep. That's all I want to do lately is sleep..if I'm asleep I don't feel sick, I don't realise how much I'm fighting for each breath and I can forget about it all.  I'm feeling better today than I was last night but it still feels like a lot of effort goes in to every breath. 
Dr Higton mention about going back on to steroids - she should be coming round tomorrow so I'm going to talk to her about it, I cannot stand the side effects. I was so low last time I was on them & I don't want to go through all that again. 
Sorry for the short blog, I'm going to go try and have a rest now. Hopefully have some more energy to see my grandparents & Tom who are visiting later. Lets hope tonight is a better night :)

Hotel Frimley Park Hospital

In the end I listened to everyone telling me to see the docs & popped down to the CF unit on Thursday - however I did make it to the end of work so I'm very happy about that! :) 

Very odd things happened..I did my lung function and sats (oxygen levels)...they were fine. Dr Higton took me for a 30 second walk but I was just gasping for breath. We sat back down in the room and all tried to figure out why I was so out of breath, yet my obs were all appearing ok? She said normally if a patient came in like that you'd assume it's a blood clot in the lung, although for some reason CFers don't tend to get those - but she thought she'd do some bloods just to check as it's not impossible..that was a long hour waiting for the results of that, just filled with panic at 'what if it's a blood clot' 'what is making me feel so ill' 'will I be staying in'. Luckily at 3pm the results came back negative - phew! Still back to square 1 where we have no idea what is doing this. So after a chat with Dr Higton we came to the conclusion it'd be best if I stayed in, especially with the weekend coming up - that way they can keep an eye on me. We're pretty sure it's just another chest infection. I've got my own hand held lung function machine and that read that my lung function had dropped from thursday - not sure how accurate it is but I think last time it wasn't far out.

Yesterday I had quite a lot of visitors which was really nice :) always cheers you up. At least I'm allowed my laptop, ipad, phone, any food, takeaways, dvds etc. Plus all the staff are LOVELY which makes it a lot easier. And knowing mum is only 5 mins round the corner is really reassuring. 

I did start to feel better yesterday but I think it was the adrenaline of seeing everyone, plus bit of a brave face. But yesterday evening about 9pm I was very short of breath again, felt awful. Tried a little walk but couldn't really manage. And this morning I've woken up feeling worse than when I came in!! I'm not breathing as quickly but I'm a lot tighter and feeling more 'yuck' which is really disheartening as I don't want to stay in here long, they originally said go home on Monday if I was feeling better, but now I'm feeling worse maybe I wont be. We'll see! 

I had a bit of a mini breakdown last night when everyone had gone home; why do IVs make me so bloody emotional?! This is my first hospital admission without Sammy. My lovely friend Samantha Morris passed away about about 10 months ago, whenever I was staying in she was always in too so we'd text or be sneaky and try to meet up in the corridor. The amount of times I have gone to my phone to text her, I even found myself beginning to type in her name at one point. It just all hit me - I didn't have my sidekick in the next room. The only reassuring thing is whilst I was a blubbering mess my little light flickered once..I swear! She must be keeping me safe whilst I'm in here..either that or trying to scare the doo-dah out of me knowing her! :) I then layed there in the dark thinking, & without wanting to sound morbid, I realised that this is life, it's not just some little thing that'll go away as I often try to convince myself & others. Hospitals. IVs. All of that. Yes I know I'm not in hospital often but at some point I probably will be..when I was a kid I always had this thing of 'it'll never happen to me' as I was always so healthy. But it's a times like these it's a bloody big reality shock that makes you realise that you are stuck with this and it may be ok for a while but it does come back, it will come back. 
Even when you're not as sick as people on the transplant list, but you're so out of breath just walking to the bathroom, transplant always crosses your mind, even if it's a distant thought for the future it's still there. Some fellow bloggers have had some really hurtful comments on their blogs when they've been open & honest like this, so if you don't like this sort of thing then just stop reading & go - I never usually write or talk about this sort of thing so it's taken quite a lot to do this - if you don't like it, lump it ;)
I'm just so thankful I have the most supportive family and friends around me because without them I wouldn't manage any of this. My mum is here everyday, nearly all day, and if I needed her at 3am because I felt worried I know she would be down without asking any questions.

Anyway, on to something slightly cheerier! My fave night nurse was on last night, Sue. She came in, gave me a massive hug and said she'd missed me. We always have such a laugh which really makes it so much easier as night times when you're feeling ill are horrible. I'm going to ask later if I can leave the hospital to go out for some dinner but the hospitals regulations have changed so I might not be able to! Maybe I should start digging a tunnel just in case ;) 

I'll keep you all up to date when I can, fingers crossed for getting out Monday so I can finish my IVs off at home!

Breathing comfortably is overrated anyway!

I've been feeling rough on and off for the past few weeks, but last weekend it really hit home. We'd been out for the day for mum's birthday..as we started walking around Arundel Castle and it's gardens I was getting pretty breathless and although I wanted to just go in a wheelchair, I was adamant I would walk around. Somehow I managed and we stopped off at the beach on the way home, the lovely salty sea air helped and I felt like I could get a better breath in. However as we left I soon went back to feeling shitty again.

In the evening we went out for dinner and at the start I was like I'd been all day, quite tired and a bit breathy but still carrying on like everything was fine but halfway through I just felt myself getting worse and worse. It's pretty damn scary when you can notice from minute to minute your breathing deteriorating. In the end I did tell mum how bad I was feeling and tried to calm myself down.  In the car on the way home I kept getting flashbacks of when I was really really poorly and just thinking that I didn't want to head back down that slippery slope. Instead of staying up till the early hours of the morning celebrating I got home and just fell asleep in bed, exhausted from the effort of breathing all day.

I'm feeling better than I was last weekend, although even now deep down I know my lungs are struggling.  I had that Monday off work and did lots of extra nebs, relaxed and just did nothing. This weekend just gone a similar thing happened and I just felt horrendous again. I know it's very hot but I feel like I have a temperature..it's a different feeling to 'just feeling hot from the weather'.
I've got hospital next Wednesday for a Kalydeco check up so I might speak to them about possibly starting some IVs for two weeks - although I am tempted to ring before then, possibly Wed after work to start some early if I feel worse. I'm feeling pretty dizzy and spaced out this evening so I'm not sure if my O2 levels are a bit dodgy so I'll see how I go and either call early or speak to them next week.
What winds me up is when people go 'ah but you're carrying on with everything you must be ok' I appreciate if I was VERY poorly I wouldn't be carrying on with things BUT just because I am doesn't mean I'm not finding it hard to breathe. I carry on because I want to and hate letting people down. All the time lately every breathe is feeling like a lot of effort - if I said every time something was a bit of a struggle people would think I was making it up..so what's the point in telling them? 

Only two more days left at work - a bonus to working in a school means 5 1/2 weeks of summer hols!

We'll see what happens and I'll update you next Wed :) Thanks guys & girls

Another angel gained her wings..'Transplant Week'

Sadly, yesterday, another gorgeous girl passed away.  Emma was only 20 years old and on the lung transplant list but unfortunately her lungs didn't come in time.  She was lovely and bubbly; so many of us are just devastated by the news. You can't ever seem to put in to words how you feel and each time another CF friend leaves you..it never gets 'easier' and you never 'get used to it' - each time it just cuts a bit deeper.
But also it opens up old wounds - every time a fellow CFer looses their battle, I ALWAYS think of my Sammy..to be honest, I think of her lot anyway, but at times like these I just want to cry and see her, be with her again and muck around, laugh and plan cocktails like we used to.

This week is TRANSPLANT WEEK - PLEASE PLEASE PLEASE sign up. There are never going to be 'too many organs'. Too many people like Emma are loosing their fight because lungs are not available often enough.  And it's not just lungs and CF patients.. people need heart transplants, eyes, livers, kidneys..
Just think - would YOU accept an organ if you needed one? If yes, then sign up..don't be hypocritical. It takes 2 minutes to type your name in, click which organs you want to donate and they send you your card. And make sure your family know your wishes. I have CF and I'm still on the register..my eyes, my heart..possibly liver or kidneys depending on their condition. You never know if you or a loved one will need a transplant, and how angry would you feel if that transplant couldn't happen because there weren't enough organs donated..you can't even imagine how that must feel to families and friends of those who don't make it. You can only be on the transplant list for so long until your body decides enough is enough. 

Transplants save lives. That's the end of it..your don't need your organs in Heaven so leave them down here and save peoples lives. 

http://www.organdonation.nhs.uk

PLEASE take two minutes of your time and save somebodies life. 

CF Awareness Week!

Each week five babies are born with CF and two people die waiting for a transplant.

So this week is Cystic Fibrosis Awareness Week and what better to start it off with than a blog post about it all! Don't worry I wont make it all dull and boring for you ;)
There are still waaaay too many people who either don't know what CF is or don't realise how serious it is - no we don't just sit around complaining about a cold! 

A few little things so you can get the basics!
. It's genetic; we're not contagious so don't worry! CF is there from birth (however you're not always diagnosed with it the second you're born! I was 3 months)
.There is NO cure (Kalydeco is very helpful to the 5% of us that can take it but it is still not a cure)
. Thick sticky mucus loves to block up pretty much everything in our bodies! This means that we get loads of chest infections - and these are pretty serious. One infection can make you spiral downwards to a place you can't get better from. It's not always a simple 'take these tablets for two weeks' - it can be MONTHS of grueling IV treatment, being unable to walk, eat, drink. It affects the digestive system meaning it's very hard to gain weight as we can't digest most of our food.
. It's not just the lungs and digestive system taking a bashing - the liver and kidneys also love to join in the action too and sometimes throw a wobbly..it takes the attention off the lungs I guess!
. There are so many treatments..tablets, nebulisers, physio, IVs, flutters, PEPs, injections..you name it, us CFers have probably had it! You can spend from 1 hour a day to 7 hours a day doing just treatments alone depending on how ill you are. 

Going to hospital usually consists of a lot of the following..check ups, x-rays, lung function tests, operations, annual reviews, bronchoscopies, blood tests, IV test doses, nebuliser test doses, physio sessions, various scans, doctors trying to figure out why your lung function wont go up despite IVs, rest, exercise (& you telling them they better start breathing properly or else!) and deep discussions about your future - such fun we go through! :) But it's fine - we're used to all the needles, tubes and medicines making us feel all strange! It doesn't necessarily make it any easier though.
And for some people there's transplant clinics on TOP of all that too (like we have more time to spare!)

CF can mean that one week you're feeling great and on top of the world and the next you're so out of breath you can't walk more than 10 steps, can't eat, can't talk and just feel like you can't carry on. I've been through that myself twice now and words can't even describe how bloody scary it is when you feel your life slipping away from you and it feels like there's fuck all you can do about it. And when you're sat in a hospital bed, on 24 hour oxygen with a lung function of 16% which is less air than in a coke can it's pretty hard when people think that you're 'moaning about a cold' or don't actually understand HOW sick you are.  

And it's not just physical stuff. Mentally, it's hard when you know inside you're fighting each day - some days are a lot easier than others when you're 'well' but still you can feel CF inside of you, there's always some little reminder. It's how you choose to act upon that that's the difference - you can sit there moaning EVERY day or you can get up and enjoy life for however long you have. 
It's hard having to cancel plans last minute because you're too exhausted to even move. Mentally..it can be quite tiring.  Not just worrying about yourself, about your future, about tomorrow, but worrying about those around you because you know their worrying about you too. But we try our best to carry on with a smile on our face because it makes life so much easier to tell people you're okay when actually you're not doing too great but it's not worth the hassle of explaining or you don't want people to think 'oh she's sick AGAIN'. 

We do have good times - Kalydeco is an amazing thing to happen (I have previously put a post up explaining all about that if you fancy a read!) and people are now living longer because of better treatments.

This is WHY we want more awareness of Cystic Fibrosis - we want people to realise what it is, what it does, but also hear about our success!! People who are getting transplants and doing really well - things like Kalydeco which have made so much difference to a lot of people's lives.  It's not all doom and gloom! Sometimes our lungs do actually behave, for a while at least :)

So please share my blog, donate to the CF trust and if you've managed to read to this point without falling asleep then thank you very much! https://www.cysticfibrosis.org.uk

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