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