Day 15...

Day 15 ... I shouldn't be in Brompton too much longer, YAY :D I think the docs are hoping for me to go home on Weds, providing all my tests come back OK tomorrow. On Friday, my CRP (infection level tested in your blood) was down to 30, from 116 when I came in, which is great :D Hopefully it's even lower tomorrow.

If I can get out this week, I can go to my aunty and uncle's big wedding anniversary celebration and my cousin's birthday :)

On Friday, I finally got to try out the Vest too. It's like a lifejacket that firstly fills with air to squeeze against your chest and then vibrates either slowly or fast, depending on the setting. Whilst it's on, you have to do breathing exercises too. This, in turn, makes you cough and it's a form of physio therapy. It's so much fun! It makes your voice go all wobbly and high pitched lol and your whole body shakes. I'm going to trial the Vest for a month when I'm at home, to see if it's beneficial for me. Here's a pic of what it looks like (ignore how gross I look!) xxx

Say 9...

Day 9 at Brompton, and starting to feel better yaaaay! My lung function is on the up: FEV1 70% and FEV2 90%. When I came in they were around 55% and 60%. Also my appetite is coming back and therefore my weight is creeping back up- put on 0.4kg last week (every little helps!) so now I weigh 46kg. My Sats are also going up, which is the amount of oxygen in my blood. When I came in they were around 93% and now they are up to 97%! This is great because it means that my airways are clearing and oxygen is able to get into my blood again.

My arthritis was still quite bad, plus I had been "exercising" with the physios, which hadn't helped so now I'm on Diclophenac- an anti-inflammatory. I take it with something called Omeprazole to line my stomach as Diclophenac isn't great for your tummy. So in a few days time my knee will be back to normal :D

In other newsss, I've decided to try and make some awareness of a new groundbreaking drug for people with CF and a certain gene type. It's called Kalydeco and is the closest thing to a cure that scientists and experts have come up with :D Disappointingly for me and loadsss of other CFers, I don't have the right gene type (even though I asked the docs to triple check!) that the drug works for; however for the people who do, this drug could literally change their entire lives! It can increase lung function and weight and mean less IV antibiotics and hospital admissions. I believe it works by "unblocking" the defective part of cells in the lungs, allowing water and salt to flow properly in and out of the cell; therefore making the mucus in the lungs more manageable as it thins it. This is the first drug to address the underlying cause of CF, as opposed to the symptoms.

Even though this particular drug won't have an effect on me, it has brought promising hope that other drugs will soon be developed to help all gene types of CF. Hopefully one day soon they will find one for mine! :D

However, as usual these things don't come easily. For the patients who can use Kalydeco, some are still unable to take this life changing drug due to it still needing to be fully approved in England and the costs of the drug. The government can help fund this drug, but it's down to them to decide whether they want to spend some money to help people with CF or if they want to spend it on something else, such as treatment for other illnesses or the NHS or building some stuff or whatever... No one can say one thing is more important than another, but personally, I hope they decide to give us CFers some funding! ;)

There is a petition that the public can sign online to help approve Kalydeco for use in England:
 ------->  http://epetitions.direct.gov.uk/petitions/34753  <----------

lovesss xxx

Day 5...

Day 5 at Brompton, tried the hypertonic saline yesterday but it was a bit of a fail :( I reacted quite bad to it- my heart rate went up, my blood pressure went down and I was very breathless for the whole day. Howeverrr, the physio said we can try different ways of getting it into my body that might make the reaction lesser, so fingers crossed one of the other ways works because I really want to find something that is going to help me stay out of hospital for longer!

Also, when you come into hosp, the docs obsess with checking your blood sugars for at least the first 48 hours. They test them the same way as with a diabetic person, a prick test to get a bit of blood before and 2 hours after meals. This is because people with CF are very likely to get 'CF related diabetes' at some point in their lives. Thankfully I don't have it yet but they keep an eye on it regularly. Anyway, it's a bit of a hassle having to do this  cs you can't snack very easily, therefore it's harder to put on weight; but as long as all the blood sugar tests come back normal for the first 48 hours then you can stop them. Typically, all of mine had come back normal so far and I had ONE left to do before I stopped them. Stupidly I had eaten loadsss of sugary food for my dinner and 2 hours after my blood sugar reading was too high (13.1). So thanks to that everyone is flapping about and I've got to carry on pricking *sighhhh*

xx

Long time no see

It has been foooreverrrrr since I last blogged! I've just been feeling to crappy to write to be honest. A lot has happened in the last few weeks, including my friend Luke's bday party, which was sooooo fun; Alex's birthday and SURPRISE party that actually managed to stay a surprise :D; started Azithromisen again after about 5 years- I'm feeling a difference in my airways and the inflammation of them due to coughing is reduced :D; and most recently Alex passed his driving test! woooooo!!!! :D This will make life easier for use when I'm unwell and will give him more freedom and independence.

So presently, I've been in hosp again for 3 days and have signed up for my free month of Netflix and I'm relaxing :D It feels good not to have to cook, clean, wash clothes etc- like a mini-holiday in that sense ;) But there are the usual annoyances of hospital too, like not being able to see friends or family as much as usual, and sleeping in a strange, noisy place. However, Sarah makes it bearable. Sarah is the reflexologist who comes twice a week- she's like an angel!!! I always feel so relaxed once she's been :D

I'm hoping to try out the Vest whilst in here this time. As far as I know, it is like a life jacket type thing that you wear during physio. Not 100% sure what it does but my Papa really want me to try it out and there's no harm in trying! Thing is, the hospital are so reluctant for my to try is for some reason :S Don't know why seeing as it's not gunna hurt them for me to try it for 5 mins!

Ahh that's all for now, shall update you soooon :) loves xx

Frustrating!

Grrrrr so unwell at the moment! :( My chest was so good on holiday and the milli-second I step back into England I plummet back down :/ Can't stop coughing and it's knackering me out, was in bed all day Sunday and yesterday; also my appetite is getting worse :(

I let the hospital know that I wanted to go on the bed list, but as usual they made it hard and want me to go up there AGAIN to see the docs! Not even joking, in the last month I have been up there 7 times- that's about twice a week, surely they can just remember one of those 7 times to see that my chest is getting worse?! I think they think I'm made of money, and traveling to london and spending the whole day waiting around in a hospital is my idea of a good time :/ I must have spent about £100-£150 going up there this month with petrol, £3 an hour parking and the occasional drink/snack. So annoyed with them, it's just not what you need when you're feeling rough! grrrrrrrr

Turkey 2012

It's been a while since I've last blogged, been busy sorting out and then being on my holiday wooooo :D Before the holiday, everything was a rush with the hospital and booking the oxygen for the airplane, didn't have time to come on here.

The holiday was AMAZING! Me, Alex, Emily and Billy went to Marmais, Turkey for 4 days; it was so hot- 54 degrees celsius! My chest was good out there too, the heat helps it and I cough so much less. Here's some pics of what we all got up to :) .......

Me on the airplane with the overly expensive oxygen!

Me and Al on the beach

Restaurant

Bar

Jeep Safari

View of Marmais

In the sea

Me and Em on the jeep safari

Me at the hotel by the pool

Me and Em on the boat trip

On the edge of the boat

ANYWAYS

A busy week has been and gone, and I'm happy to say I can breathe again lol! My IVs have started to finally kick in, early days yet but it's so exciting when I start to feel better, because I can plan things and start up my life again. I'm going to go visit some dog kennels within the next week to see if there is any work going, whether it's voluntary or paid.

I need to work on my weight though, as after I reached the heaviest weight I'd ever been (48kg/7.5stones), I've plummeted back down to 45.5kg :'( sooooooo frustrating! It was such hard work just dragging it up to 48kg and in such little time it's dropped so much. But that's just one of the joys of CF lol, and I'm sure that other people with CF can relate to the frustration I'm feeling!

I still have just under a week left of IVs so hoping to improve even more :) fingers crossed.

Last week, in preparation for my holiday, I went for a fitness-to-fly test. I requested it just a few weeks ago and luckily they had a cancellation so I was able to have the test quickly- usually it can take 3 months just to receive an appointment. During the test, you sit in a small glass box with ECG wires, a carbon dioxide wire and oxygen level probes attached to you. You can't feel anything from them except the carbon dioxide wire heats up a bit so a bit of your arm goes warm. Next, the lung function/doctor person switches on a machine that sucks out the oxygen, to recreate the air inside an airplane that is something like 4,000 feet in the air. On ground level, the amount of O2 in the air is around 21% and up in an airplane it's around 15%. The lung function/doctor person had to switch on the 'emergency O2' because my sats had dropped to 82% (the lowest it is safe to be is 85%) and he said I had started to hyperventilate and my heart rate raised. To be honest, I didn't notice a thing! I just felt a bit sleepy but I didn't feel breathless or anything. Just goes to show that your body can go into 'emergency mode' without your mind really knowing what's happening or panicking. Anyway, basically from that it showed that I'm going to need O2 on the plane- which annoyingly the airlines can charge you an extra £150 for your ticket because of this! Talk about discrimination- it's not our fault we can't breathe! :/

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My lovely daddy designs board games with his older brother and best friend. A few admissions ago, I was bored out of my mind as usual and moaning about it. I really enjoy playing Scrabble, so my dad suggested I played Scrabble with myself during the days or play it on facebook against friends and family. I explained that it would be rubbish playing myself because it would just make me cheat and that I already play on facebook, but if the opponent isn't online at the same time, you can't have more than one go. So with this, he said he will try and think up a game for me to play in hospital.

A few weeks later, he came up with a game! Similar to Scrabble in the sense that you have tiles and make up words; but different to Scrabble in that you don't have to have a wide vocabulary or know long, complicated words. Therefore absolutely anyone can play and enjoy it! 

You have 4 tiles that you pick out of two bags- vowels and consonants (so long gone are those Scrabble days of 7 vowels!) Then in each turn, you only put down one tile- this may sound impossible to create words from but the tiles make up the words any ways (the name of the game is ANYWAYS). So you can read them normally, backwards, up, down, diagonally... ANYWAYS :D 

This may sound complicated, but here's a piccy of a little game I started with myself- yes, you can play it by yourself when you're bored in hospital :D This may make my bad explanation of the game a bit clearer...

If you can see, the words I have made are: rota, at, won, now, raw, war, toys, loop, pool, no

So thanks to my dad, I now have something I can do when I'm admitted to hospital, to take away the boredom :D If you know anyone who would benefit from this game or would like to have one yourself; whether it's for hospital, education or just fun, visit my dad's business website at http://www.ragnarbrothers.co.uk or ask me for details :)

Lovesss xxx