Monday, 23 July 2012

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

Tuesday, 17 July 2012

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:
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lovesss xxx

Friday, 13 July 2012

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*


Wednesday, 11 July 2012

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