Saturday, June 14, 2014

Physio method: BiPaP and Compressor.

Just thought I'd post a video of a method of physio that I do. This can be done on my own or with percussion from someone at the same time. 

It's a BiPaP machine and compressor linked up together. I take 8 breaths at a time holding each for 2 seconds. While I breathe in, the BiPaP machine pushes extra air into my lungs to shift the mucus. I then do a 'huff' where I take a big breath in and force it out again causing me to cough up the mucus. In the chamber I have hypertonic sodium chloride which the compressor activates to stop the breath in being so dry making it easier to cough up the mucus.

I usually do 5 cycles on each side or until I've stopped coughing up the mucus.


video

Tuesday, June 03, 2014

65 Red Roses

So... Where to start. I haven't updated the blog in 2 months. I've been really busy with work, hospital and my birthday etc. 

I expect this post is going to be long, so sorry in advance. 

Work- 

I'm not sure if I mentioned it in any previous posts, but the company I was doing my apprenticeship with were not very helpful. Not the nursery. The company that got me my interview and helped me to get the job. I was left to try to complete the work on my own and was struggling big time. Anyway my manager got in touch with the Bright Horizons company, as they now own our nursery, and I'm now doing my apprenticeship with them and it's going really well. I go to lessons in Fleet every Monday and my assessor then sets me the work and she comes and visits me at the nursery to. She's really good and I feel like I'm actually getting somewhere now. The only thing is, whenever I sit down at the computer, I find myself completing and submitting my work and never finding any time to update my blog. So sorry for the long wait!! 

Hospital-

Since my last appointment I had another hospital appointment on the 23rd April. It was so long ago I can't really remember what happened. Woops! Nothing bad as I would have remembered. The lung function had improved a little bit after the Doxycycline and Prednisolone. That day was also Abbi's 21st Birthday so me, mum, dad, Abbi and Adam (her boyfriend) went out for a meal at Ask Italian. George was in Disneyland with Ben that week so didn't come with us. 

On 22nd May I had my hospital annual review. You have these every year at the hospital just after your birthday where they do lots of tests and talk to you about the future. 

First was the glucose tolerance test (testing for diabetes) where you drink an absolutely vile sugary drink and then Judith takes regular bloods to see how your body responds to the sugar. Dad thought it was hilarious watching me drink the drink as it was so disgusting and took me about half an hour! But anyone who has done the test will know the taste and know where I'm coming from. I will find out the results of this in 6 weeks time. Fingers crossed its all normal though otherwise I'll be pricking myself as well as my enzymes every time I eat! 

I also saw Jo, the physiotherapist, and we discussed my lung function over the last year. 2013 it was pretty stable in the 50s/60s but since 2014 it's been up and down where I have been rubbish with doing my physio regularly. I know I need to do it and I keep telling myself I will. We also spoke about me joining the gym. Abbi goes to the gym so I might start going with her.  I've thought about maybe swimming to. As part of the physio annual review you have to do a step test. This is a test that has 5 stages where you have to step up and down off a small step in time with the beat on the cd. Each stage the beat gets faster and you have to try to keep up. At the end of each stage, Jo checks my heart rate and I rate how I am feeling on an exertion scale. I made it to the end of stage 5!  I reckon I could have done more but my left leg was really aching for some reason!! 

I also saw the dietician- not Charissa this time and I actually remembered her name for once. But I can't remember the name of the dietician I did see. Woops!! She was really impressed with my weight gain in the past year which I'm proud to let everyone know I'm past my goal of reaching 50kgs!!! 

Judith then did her usual chat about the future. I was on my own for this as mum couldn't make the review due to work and some of the stuff we spoke about was private so I didn't want dad in the room for this bit. She asked me about transplant and having children etc. I do think about these things. But I'm not sure on my decisions until the time comes for transplant! I don't like to think about transplant and becoming that ill, it scares me. So I try to just be positive and think about now instead. 

I find out the results of the review in just over six weeks, on the 8th July, so hopefully everything is still fine. 


My Birthday- 

I'm finally 18... YAY! My birthday weekend was really nice. Max took me out for a surprise meal at an Italian restaurant on the Friday. (I'm so forgetful that I can't remember the name of the place, sorry max)! The meal was really nice. We both had our usuals.. I had spaghetti with meatballs and Max had Carbonara. 


On Saturday I also had another surprise. Me, Mum, Dad, Abbi and George all went to a tea parlour in Basingstoke. It was a really lovely place and they had the best cupcakes!!! 




















Then Sunday was my actual birthday! In the morning I opened all my presents and cards with Max and the family. I got so spoilt. Max got me some amazing Barbie High Heels that I've been after for ages! Mum and Dad got me lots of things. My favourite thing was my Links of London bracelet :). George got me a Pandora bracelet and charm and Abbi got me some heels for my holiday to Gran Canaria with Max and some other various bits. 





  
In the day me and Max went birthday shopping and I spent some of the money I had received. I got myself some all white leather Pumas that I've been after for a while! 

Then in the late afternoon we all went for a Carvery which was really yummy! Roast dinner is my favourite so I couldn't wait for the turkey!













After the meal, Me, Dad, Max and George went bowling. Of course dad won both games but it was good fun anyway. 



















The following weekend was mine and Abbi's joint birthday party at the White Hart Pub. It was really good to see everyone and I was really enjoying myself.























Unfortunately, about half way through the night a person who was in the public side of the pub said some nasty things to me and about me to my friends. Things I couldn't imagine someone could even think of saying about me because of my Cystic Fibrosis. I'm not going to post what he said but he basically ruined my night. It's funny how nasty and small minded people can be for no reason. Especially when they have no idea what the illness even is or how it affects me. I don't even know why I'm mentioning him probably because I kept thinking about it after. 

Anyway despite that the party was good and I'm finally going out to town this weekend! 

Lungs have been crap again this week! I woke up this morning coughing up blood. This is never a good sign! Mum has got me some transamic acid to hopefully stop it, this usually works! 

My tummy has been feeling really bloated as well lately, I don't know if it's something to do with the amount of enzymes I'm taking. I'm going to have to ask Charissa at my next appointment. 

This evening I've been watching a Cystic Fibrosis Documentary called '65 Red Roses' it kind of scared me a bit about the future. Like I said I like to think positively about now but watching that just got me thinking! Unfortunately, Eva passed away in 2010, 3 years after her transplant, but the film was really good as it explains the worst part of CF. But I wouldn't watch it on my own if I was to see it again. I'm sure mum will be crying when she sees it. 


Here's the trailer.


Sorry to end on a downer, I'm never usually like that but I hope reading this makes people a little more aware about CF.

Live life to the full despite anything weighing you down!