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

Hospital, overdose of steroids & updates!

I've not been good at updating my blog lately, so I've got a few pics and things to update everyone on! I'm writing this whilst buzzing quite a bit as I thought I was grabbing an ondansetron out of the cupboard but it was actually a steroid so I've overdosed on those instead! Such a twit..

Today I've been back to hospital, it was lovely..they had Christmas music playing, mince pies & a few decorations :) I just want to take a minute to say how lucky I am to have such an amazing team of nurses and doctors at my hospital..they are just incredible & without them being they way they are hospital visits would be a lot tougher! Anyway, lung function was a little lower but only by like .1 of a litre so that's fine! I said could they take bloods to check iron again as I know 5 months after the transfusion my iron levels drop again so better be safe than sorry :) Dr Ho spoke about Kalydeco again and he said it's so difficult because he just wants to be able to give me the tablet! (so yes, a decision has STILL not been made...guess we'll all have to continue hanging on to the new year..)
Shelley did a brilliant port flush so Paddy has had a drink! I handed out the Christmas pressies I'd got for the nurses and docs.. homemade hot chocolate on a stick :)

I couldn't believe it but yesterday was 3 months since Samantha went to join the angels.. time has gone so quick since then but I honestly think about her every day. Especially when I'm feeling low or worrying about my health I think of how amazing she was at getting my through my very tough time last year and how strong she remained, even when she knew she had weeks left she still had time to joke about with me, talking about cocktails we liked..so I often think of her & that keeps me going. On Christmas Eve mum and I thought we'd go to the green & let off one of those lanterns for Sammy :)

So that was a pretty good hospital review, I'll get the blood tests back by the end of the week hopefully! However since I've got home I've just started to feel a cold starting so I'm hoping it turns out to be nothing *fingers crossed* 

Here's a few pictures of what I've been up to lately!

Gabby, Steph & I

Cocktails with the girls.. a lovely much needed Christmas catch up :)

Kalydeco

Many of you will have heard me mentioning about Kalydeco in previous blogs but a lot of people still have no idea what it is or how life changing it can be. So I thought I'd do a little blog on what it is about and the problems we are facing with getting Kalydeco.

Kalydeco treats the cause of CF..it's caused by two faulty genes and there are many different mutations on genes. Kalydeco works with gene G551D which is one of the genes I have! In America this medicine became approved and has been used since January. The problem we are finding in the UK is that it is VERY costly; approx £180,000 per person per year. The drug company (Vertex) aren't wanting to reduce their selling price but the Government wont provide any extra funding for this new drug & are therefore saying that people can't have it. NOTHING like this has ever come about for CF before - it is by no means a 'cure' but it will improve quality of life dramatically. What is the point in spending billions creating a medicine that in the end wont be used? The NHS & drug committees need to agree the funding. All the treatments we take for our CF treat the consequences of our illness whereas Kalydeco modifies the genes..this tablet fixes the fault that causes the problems.

At the moment everyone involved is meeting mid December to discuss the matter further.. They said in September they would make a definite decision but put it off for another few months..they cannot keep doing this. Some people desperately need this drug & do not have a 'few more months' to spare!

The improvements this drug can make is incredible. I have a few friends who have been giving this drug on compassionate grounds, either they had lung function below 40% for over 6 months or where on the transplant list. These people have come off permanent oxygen, stopped relying on wheelchairs to get about because they're too out of breath, been fitter and healthier. If Kalydeco is going to improve someones life THIS much then it is insane not to give it to people..at the moment it feels as though they're dangling a thread going 'oo look at this lovely thing you could have that will basically stop you from having more permanent lung damage and dying, oh wait no you cant have it!' 
My doctor was saying it is SO frustrating as it is just right there yet we have to continue waiting.

This blog is essentially to help gain a little more awareness of what Kalydeco is, the problems we're having and how amazing it can be! Having to focus ALL the time on how you're breathing and noticing each breath as each one is a slight struggle even when healthy can be so mentally and physically draining but us CFers carry on fighting in hope that this drug will become available and help us.

PLEASE share this & tell people. If the decision comes through from the next meeting that we can have Kalydeco then it'll be life changing but if the decision comes through that they are NOT giving it then we will be pushing towards the press and will be doing everything we can. So until that day comes there is no more we can do but raise awareness and sit here and wait.

Below are a few links to either blogs of those who have had Kalydeco & you can see their amazing changes or links to newspaper articles

www.facebook.com/QuestForKalydeco

http://thesprogslife.blogspot.co.uk

http://www.swindonadvertiser.co.uk/news/9888098.Joy_over_prescription_for_life_changing_drug/?ref=mmsp

New Nebbie!

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




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

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

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

Mmm mulled wine & roasted
chestnuts

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

Hospital time again!

After feeling horrendous all week & having lungs that felt like glue I thought 'oh here we go, I'll go to hospital, lung function will be awful and I'll be back on IVs'! So I went to hospital.. and for some reason my lung function had actually gone UP! What on earth?! So my lungs feel like shit and my lung function increases..that makes sense. Haha, oh well I'm not complaining! 

This is what I assume the Pseudo in my lungs
looks like!

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

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

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

Little move around!

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

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

Fingers crossed for feeling better tomorrow :) 

Poorly lungs

Here we go again! Thursday I had a tickly cough that just got worse and worse as the day went on, ended up going to bed knackered in the evening. But at 3am I woke up (and woke mum up too with my coughing!) and had the mother of coughing fits and could stop coughing for more than a few seconds till 6.30am! Everytime I thought I was just about to drop off I'd bloody cough again! 

Cough mixture in warm water,
night nurses tip to sooth
the tickly cough! 

At 8am I woke up to let work know I wouldn't coming in, thought I felt a bit warm and was completely out of it, confused, dizzy and though 'oh here we go' and went to find mum to tell her I was convinced I had a bit of a temperature. Checked it..... 38.3degreesC! Lovely! Rang hospital and they said that there wasn't actually a doc there! Dr Higton who was doing the clinic bit was on holiday and Dr Ho was doing the wards. Ahhh. In the end Judith managed to get hold of Dr Ho who said to take some coamoxyclav that I had in the cupboard and see how I go over the weekend and call them on Monday.
As the day went on I just felt horrendous, my lungs were not cooperating at all. I went to the supermarket with Mum to grab some things. But at one point I thought I was going to have to ask her to pop in a wheelchair to wheel me round as I was exhausted, my lungs were exhausted but then I was like 'no I've GOT to push myself' so I managed a little walk around Waitrose (despite coughing my lungs up whenever I went down the cold isles!)


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



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


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


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

1 year ago..

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

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

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




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

























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

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


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

Chest pains :(

Spoke too soon yesterday when I said this cold hadn't spread to my chest! Woke  up this morning with really really bad lung pain, all down the back. Was in tears over it.. In the end I took some painkillers & managed to drop back off to sleep. Rang hospital (really didn't want to but mum said I really should & from experience mum knows best! Hehe) and Dr Ho said to keep on top of the painkillers, my Azithromycin (antibiotics) which I take every other day he said I should now take EVERY day & then see how I feel on Monday..if I feel the same or worse to go down & maybe IVs. GREAT! Not what I wanted considering I have my week off this coming week..have lots of lovely things planned and I don't want to have to cancel my plans and spend the week feeling shit. That's one thing me & fellow CFers were saying about earlier, we hate having to cancel plans because we suddenly come down with something & are unable to do things. 
My lungs feel like somebody is poking about inside them, they're really tired, I'm exhausted (keep sleeping so much), headaches, dizzy, feeling quite out of it too & feel sick..even my ondansetron (antisickness) aren't working :( My cough has got worse too which is tiring in itself..people underestimate how exhausting it is coughing so violently ALL the time & trying to clear your chest.
I must be feeling rough, I even did an extra neb! Haha.

ERGH! It was around this time last year that I became REALLY REALLY sick and of course I know I'm not as bad as that it still sends me panicking that things are going to take a turn for the worst like they did last time.
I've spent yesterday & today just lying on the sofa in my pjs, trying to eat as best as I can, feeling crap & the fact today I feel worse than yesterday is not making me feel any happier about it all!

I'm really hoping that this is just going to go over the weekend and on Monday I'll have my energy back, my little lungs will be rested & feeling well and everything else will sort itself out! Or it's down to hospital I go to see what they say.

Colds, cough & a week off

Just realised as I typed the title of the post that it rhymes!
Anyway!
After a successful hospital visit last Friday, I woke up yesterday with a swollen throat..didn't feel particularly sore but felt like my tonsils were soooo swollen, found it very hard to eat & drink. Had a bad headache, awful nose, coughing like a loon etc. Managed to pull myself into work with the use of painkillers & anti sickness stuff but when I got home I was just exhausted! I couldn't sleep properly last night and was up a lot during the night coughing and sneezing my head off so didn't managed to go in today.
The problem is, when somebody with CF gets a cold, it's not just your average 'oh I have a bit of a cough, headache and a sneeze' it hits us bloody hard! I'm not saying non CF-ers don't feel ill, just saying that we really do suffer more due to our chest. We get sick a lot quicker, it affects us a lot more than it affects non CF-ers and there's always the big worry of 'please God do not let this spread to my chest' because then there starts a lot of other problems! 

I don't think this has spread to my chest really, yes I am coughing a fair bit more..but it's not an extremely chesty cough (yet! touch wood!). My chest is struggling more than usual but it's nothing TOO bad I don't think! Problem is, us CF-ers get used to feeling shit so even when we're feeling awful we keep thinking 'well it could be worse' (such as not being able to walk more than 10 steps) so we just push ourselves and carry on therefore making us more sick! 
So I really need to learn on detecting when enough is enough! Which is why this morning I stayed off work :( and had a day in bed.. I've literally slept nearly all day.. had an hour awake to try and eat a bit of lunch (my appetite isn't too great at the moment) and then fell back to sleep again. If I sleep anymore I'll probably end up hibernating! Also, I fell asleep with the heating on and woke up so toasty!

On another note, I rang hospital about my iron levels & said they were perfectly fine! This always happens so I might get them to check them again in a couple of weeks when I go back to see if anything's changed :) 

Good thing is, next week is half term..one perk to working in a school is we got holidays! So I've got a fun packed half term ahead of me... going shopping in Westfields with Mum, visiting my best friend Luci at uni for a couple of days, then a day to relax at home.. So I NEED to be better for then!

I'm off to lay on the sofa in my pjs, under a blanket with some lemonade and sugary ginger. Yes sugary ginger pieces are a lifesaver when you're feeling sick!

Bye for now :) xx

Hospital time again!

Today I went back to the hospital after managing a whole month without an appointment *cue cheering* That's the longest I've managed in over a year :)
AND to add to great achievements I've also managed two months off IVs :) even better! Compared to how I was feeling this time last year I'm so grateful of everything the doctors have done, my family/friends have done in supporting me and I have done to get myself back to feeling like this. Yes my lung function still has a fair bit to go to where it used to be BUT I'm a lot better than this time last year so I'm happy :)
So I popped to hospital and they checked my weight which was stable so that's good considering past few days my appetite hasn't been as much. My lung function was scarily EXACTLY the same as last time! Dr Ho came in, was happy with everything..apologised for the reaction to the nebuliser I had last time! His words were 'sorry for nearly killing you, don't worry we wont try it again!' Haha :)
He wondered about giving me azteronum nebulised (never had it before so if any CFers have had it let me know what it's like, if it works for you!) but he thought he'd rather use that when I am feeling more chesty so that our first resort isn't IVs next time, he'll try this first! So he decided on giving me Ciprofloxacin (just some antibiotic tablets) for a month to hopefully give me a boost. Last time I had them I did feel pretty sick and ended up with rashy feet and sunburn..the bloody tablets even give you sunburn in the winter! So I've stocked up on antisickness tablets so hopefully I can managed but he said just stop them if I feel really rubbishy!
I also asked Dr Ho to check my iron levels as I'm getting the usual symptoms again so Judith (lovely nurse) took some blood. I'll ring in the week to see what it's like. He wants to know WHY its going low so often, transfusions should last 9 months not 5! And also my levels go from fine to literally the next week being at 0! Nothing. I get the symptoms like a month before hand too so he wants to find out WHY it's doing this! 

Apart from all that, Paddy the port had another flush of saline and heparin so he's all topped up and working fine :)
Pretty happy with how it all went and I don't have another appointment for yet another month! Result!

Last thing, I swear my lovely friend Sam must be looking down on me at hospital! Last time I went the blue paper wafted as if a breeze were there..but there was no breeze. And today the bin went clang when nobody was near it and it was shut. If anybody would try to make me laugh it would be Sam! And both hospital visits have ended well so she must be sending good luck vibes to me..and possibly scaring away the dietician as she's not been to see me at all! (Sam and I used to laugh about the dieticians constantly moaning at us when we were poorly and not understanding it from our perspective!) 

Have a lovely weekend xx

It's been a while..

Haven't blogged for a while but I've been pretty busy and healthwise nothing major has happened lately apart from a few little bits like low iron symptoms (i'll explain more further down!)..which is good but when everything's all fine & dandy healthwise I'm never too sure what to put, I don't completely want to bore people with every little detail of what's going on in my life, or what I've had for dinner etc!

Anyway, works been going really well, I've been out & about with friends and spent time with my family too! 
Last weekend it was my little cousins birthday so we all celebrated that & my cousin Sara made a GORGEOUS kitkit and m&m cake.. YUM.




During the week I've been at work, had a lovely catch up over a Starbucks with Emma & then Steph and I had a lovely evening out for a few drinks on Thursday! 







A couple of years ago they found out I was anaemic (low iron). It was very odd, I was poorly for a good couple of months and all of a sudden I had no iron in my blood. One week the levels were fine and the next week there was NOTHING. Not a drop! Docs thought it was odd but I had iron tablets and after a year my body though 'hey I'm bored, lets stop absorbing the iron tablets and be a pain in the ass!' So surely enough, my iron levels went low again; luckily I knew the symptoms from before! So seeing as I was in hospital (this was last Nov) I had an iron transfusion. Now these are meant to last around 9 months.. but my body again being awkward thought it would use up all the iron in 5 months instead! So again I said my iron was low as I was getting the symptoms..they checked it and said no levels were fine! But I kept on and on every week as I was pretty sure it was low and suddenly one week there was no iron again! So strange.. So I had another transfusion. That was around 4-4 1/2 months ago now and I'm wondering if I'm getting the symptoms again. The odd this is I seem to get the symptoms 3-4 weeks before it says the iron is low on the blood tests :S no idea why. But I'm VERY tired all the time, can't concentrate, pale, get upset or angry over the smallest of things (which really isn't nice..you can get in such horrible moods for no reason and I hate it) and feeling queasy with bad headaches. Another odd symptom is wanting to crunch ice...no idea why! I could be completely wrong & just having a rough few weeks with it all but I have hospital this Friday (yay for managing a month without an appointment, longest time in year!!!) so I'll ask them to check levels and then keep an eye on it. I can always go for a blood test in a couple of weeks if I feel it getting worse. Low iron is such a horrible feeling. At least it can just be sorted out by an easy iron transfusion, although that does take 4 hours to go through so I'll have to get some yummy snacks and some magazines to take down to hosp for the day!

Anyway, I saw this on somebodies instagram and loved it! I should realise this somedays as I do forget the sometimes I do need to just have a day to relax and do nothing but when you're feeling well you don't want to do that!

My instagram is grace_oshea if anyone fancys a peek! 

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Thank you :)

http://www.ipetitions.com/petition/campaign-for-kalydeco/

Mysterious leg pain!

I'm sorry it's taken nearly two weeks to update my blog but I've been quite busy from work, very tired after work and healthwise (up until last friday) I've been pretty good!

You're probably wondering from the post title what I'm on about..basically for like the past 5/6 years I've suffered with the most horrendous leg pain. NO, it's not cramp, I'm not that stupid! And I've been checked for arthritus etc and it's not that. They've scanned it, x-rayed it...nothing. Not a thing at all.
I can happen in either leg, originally it started off in my shins and now it can hurt in either my foot, ankle, front of leg, back of leg, all the way past my knees, back of my knee etc.. either in one of those places or most of them at the same time! It can hurt for either 30mins or 12 hours.. it's THAT random. Doesn't matter if I've been doing exercise, not doing exercise, wearing heels, not wearing heels etc. It's not hot or cold or hard or anything. It can go from 'owch thats beginning to hurt a bit' to me crying in the middle of the night because it wont stop hurting. Just a really painful dull ache, not a sharp shooting pain or anything.
The main reason I'm blabbing on about all this is in the hope that SOMEBODY CF-er or not will have some idea what the heck is causing it!!!! It's sooo strange, my doctor when I was a child used to call me 'funny legs' and any doctors now (diabetic and CF) are clueless as to what it is..not even related to how my lungs are! So it remains a total mystery..if you have ANY idea, feel free to twitter PM or facebook PM me if you don't want to leave a comment on here! 

Treated myself to some warm cosy
new slipper boots!

Trying to think if there's anything else that's been going on.. oh yeah, had my flu jab which gave me a high temperature and awful chest for a couple of days! Fun fun fun. 

Just a quick post tonight as healthwise everything's not been too bad at the moment :) (finally, needed a bloody break from IVs & everything for a while!) 

It was my friend Samantha's funeral on Friday, I couldn't be there but she requested that everyone wore bows as she loved them. And seeing as the Cystic Fibrosis colour is purple, I wore a purple ribbon tied in a bow around my wrist the whole day (as did Mum) in memory of Sam. xx

Made a lemon meringue pie
Culinary genius ;)

Strawberry daquiri time!

Too many emotions..

I'd like to begin this post to ask you to remember my friend Sam, her family, baby boy & friends in your thoughts and prayers. On Monday I heard the sad news that my lovely friend Samantha sadly lost her fight with CF. She supported me so much when I was poorly in hospital and we had so many giggles whenever we were in together..talking about turning our fridges in the hospital rooms into cocktail bars and laughing about silly doctors who asked us 'how many times we coughed in a day'. I'll miss you lots and miss chatting in the corridors, thank you so much being there for me. Breathe easy now sweetheart xxxx

Please please please sign up to become an organ donor, spread the word about Kalydeco and raise more awareness about Cystic Fibrosis..not enough people understand how serious this illness is.

I spent today at hospital, another clinic visit. Wasn't very nice going there after the news yesterday but somehow I managed it. And I think Sam must have been looking down on me and giving me good luck as my lung function had gone up! Which completely surprised me as I've been having lung pain since Thursday and was convinced I'd be back on IVs again. So to go and have that happen, weight is stable and everything go okay was such a relief! 

Paddy was flushed too (this basically means that they put a gripper in and put saline and heparin in which has to be done every 4-6 weeks to make sure that the line inside doesn't get blocked).

However, they wanted me to start back on nebulised Tobi which I was on over a year ago but stopped. When I had Tobi IV I ended up permanently dizzy for nearly a month and couldn't walk straight or anything! Anyway, I gave the nebulised Tobi a go..after 15 minutes we did my lung function again and it had gone down a fair bit which proved that my lungs didn't like it at all. So the doctor came back and said 'im sorry for torturing you, we wont give you that anymore..maybe next time you come back we could try it mixed with ventalin to see if that stops you becoming tight chested' so I thought that was a good idea :) But just as I was about to leave I started swaying and walking like a complete drunk! So ended up sat down for another half an hour as I couldn't stand up. At least my mum and the nurses found it quite amusing..hehe.

Mum, however, got me a lovely cake from Patisserie Valerie 

Too many emotions this week & it's only Tuesday

Here's a couple of pictures from over the past week.. 

Sore lungs :(

I've still been busy at work, had a friends birthday BBQ the other night as well which was lovely. But yesterday my top right lung was quite sore :( it seems to be a bit of a weak place as whenever I get this type of lung pain it always starts up in that corner at the back! Little bugger. Woke up this morning hoping it'd be gone as sometimes it just lasts a day but no, naughty lungs are still playing up! There's a dull ache there all the time but when I cough it hurts quite a bit now! Despite that, I feel okay in myself..just very very tired. So I'll see how it goes over the weekend, my hospital appointment that was meant to be today ended up changing to Tuesday! Obviously my lungs realised this so decided they wanted a bit of attention. Hopefully it'll be gone by Tuesday though. Time to step up nebs, do some physio and see if I can sort myself out for then :) Still off to work though, gotta keep plodding on! But thank god it's Friday! 

And to top it all off I have the most poor excuse for a sore knee. Last night I managed to trip backwards over a tissue box onto the sofa, thought nothing of it until I went to walk later on and realised my knee is actually quite painful. And it's still sore this morning! But I can't really say I've hurt my knee because I tripped over a tissue box can I?! Such a clumsy cow..

Anyway, have a lovely weekend! Let's hope these lungs stop being a pain (literally!) and improve before Tuesday comes :)

Busy week!

Sorry I haven't blogged in quite a few days, been fairly busy!
Here's a few things that I've been up to.....and of course lots of pics to go with it all. You know what I'm like..
One thing I've learnt this week though is that clubbing is actually really good physio! If I do my DNase neb before I go out, the amount of dancing and walking etc shakes everything up your lungs and the heat too.. it all gets you coughing loads! Who needs to do altergenic drainage and percussion anyway! ;) 



1. I made some delicious smoked haddock fishcakes. Definitely going to make them again..












2. I had a lovely time at the Paralympics seeing 
 the track and field events in the Olympic Stadium. It really was amazing and we managed to see Jonnie Peacock win his semifinal :) We did go up by train which is fine but then had to go on the underground which was very very busy; but I was actually okay (for once!) And I didn't end up with a cold! Which is amazing because nearly EVERY time I go on the tube in London I end up catching a cold or a chest infection so I'm pretty happy about that! 













3. We've had our kitchen redone and it looks LOVELY! So good to finally be able to cook in it :) So I've cleared a cupboard out to pop all my medication bits and bobs in so it's all tidy..I took my big basket out with my morning meds in and look who jumps into the cupboard to hide.. 

The little pickle! 






4. On tuesday I started back at work! Met my new class that I'm working in on Wednesday :) They're lovely! Although after only a few days I am shattered already! Coffee is certainly helping in the early mornings :)





5. After a busy week and everything I had a relaxing day with my family on Sunday at Nans.. 

So for some reason I had a little bit of a high temperature this morning..but I feel okay apart from my chest being sticky on and off through the past few days..bloody lungs! But I have hospital on Friday so we'll see how everything is then! Fingers crossed for decent lung function and no IVs!! 

Running on 'autopilot'

I'd done quite a few 'happy fun going out-y' blogs so I thought seeing as this is a CFy blog it was time for a more serious post!! And there's a little idea for you do to at the end of the blog too :)

I sometimes think us CF-ers have some sort of superhuman strength! No, we can't fly or things like that but the amount of shit we see as 'day-to-day' and 'put up with' is actually quite a lot that 'normal' people would just complain about all the time!
There are some days (and I've felt like it the past couple) where I just feel like I'm running on some sort of autopilot..I feel quite sleepy but not able to actually sleep well, my chest is blergh but not bad enough for me to think 'oh crap better get down the hospital' and you just feel like there's a little switch in your brain that turns on just to keep you going when most non-CFers would probably have a day in bed and say they feel ill. You just kind of learn to 'get on with it' and I swear you put up with a lower feeling of normal. If I wake up, chest is alright but not amazing, I have a little headache and not tonnes of energy I still think 'ah I feel pretty good today!' so in a way I think it makes you a lot tougher both mentally and physically as well!

I think that's where the difference is, I've had people complain endlessly about having a cold..and I'm sat there like 'oh my gosh a cold is fine! Try having a full blown chest infection and being so breathless you can barely talk!' or people moan about having to take like two paracetamol when I'm necking down tonnes of tablets a day! But it's hard to remember that that isn't the 'normal' thing..I see taking tables, doing nebs, doing physio, having 6 hours worth of treatment a day, going to hospital all the time and staying in as 'everyday' and not an odd thing! Whereas so many non CFers get freaked out by the words 'blood test'! I've dosed myself up to the eyeballs with painkillers, whilst on really heavy IVs, finding myself feeling really tight chested and knackered yet still managed to go out with friends for the evening because I hate missing out on stuff and letting people down last minute. I just WISH for a few minutes you could let someone else FEEL what it's like day-to-day AND when you're poorly because then maybe people wont think 'oh she's just moaning from a cold' when you feel like death or 'she's managed to get out so she must be fine' when actually you really should be in a bed resting but you troop on to make sure you can see people as you hate letting people down. Because I swear some people think you make up how you feel..do you really think I'd like to have CF? Another hilarious comment is 'you are so lucky you have CF it makes you skinny' errrm? Are you sure it's lovely that my lungs are screwed but at least I get a lovely figure from it? Well no actually, I'd rather be a little podgier thank you ;)

I once heard from a doctor that a non-Cfers 'tired' is like a CFers normal..it takes so much energy out lungies to breathe that we're never at 100%. And the amount of treatments we do. I counted that when on IVs I did MANY hours of treatment a day.. 
Nebulisers: couple mins to set up and get meds for nebbie, 5-10mins to do, 5mins to get hot soapy water and pop in bowl and tidy everything away, leave it to soak, then another few mins to wash out. And thats at least TWICE a day, can be a lot more when I'm really poorly.
IVs: well these can take bloody hours sometimes! Most of the time (including preparation time for all of it like getting meds set up, washing hands thoroughly etc) it takes a good 1 1/2-2 hours TWICE a day. Sometimes thats 3 times a day again if I'm really poorly.
Tablets: well there's millions of the buggers! So it takes a good few minutes in the morning grabbing them all and sorting them out, remembering to take them at different points in the day and before I go to bed and everything
Physio: Ok admittedly, I could do this a little more often as I don't do it EVERY day like I should. Mainly just because when I'm feel okay, I forget to do it as I'm not thinking 'oh gosh, I feel rough really need to shift this rubbish!' Usually I do about 15-20mins of breathing, sometimes 30 minutes of percussive physio on top of that when I'm feeling quite chesty. But you can do a good hour twice or more a day when unwell. 

Another thing is hospital visits..I swear that place is like a second home and the nurses and doctors are like a second family! I can go a good month without a checkup when well, I think last year the longest I managed was 3 months without an appointment :) But when on IVs you have to go every 2 week as they need to review you and possibly change what IVs you're on or stop them if you're well enough! The longest I've spent in hospital is the 2 weeks in November..the other times it's only been about a 1 week. (here's me saying only, most people would cry over one night!) but it is a lovely unit! I get my own room, en suite, widescreen tv, sky, a Wii, free wireless, telephone, fridge, wardrobe. There's also a kitchen so mum can cook me something (us CFers aren't allowed in there due to cross infection) and I'm allowed takeaways in there and visiting is pretty much any time in the CF unit so I'm VERY lucky :) 

Anyway enough jibber-jabbering. My lungs have been feeling quite 'sticky' past couple of days so I think stepping up the nebs and doing some extra exercise will do the trick.. I have hospital on the 14th anyway so if not I can talk to them then :) 

I will leave you with one final thought..I was once told that breathing every day for someone with CF is like a non CFer breathing through a straw. So I test you to get a straw, breathe ONLY through that..go for a run up and down the stairs, sit down for 20 minutes, run about some more and try and do your day to day activities and see how much effort it is just breathe..and that's how its like when a CF person is feel GOOD!