Friday, 17 February 2012

Update of what's been different with my treatment?

So i've been here a week and a half now, i can honestly say my little lungs are starting to feel better and i'm feeling more like myself.  I kind of feel safe here, like they really are doing alot to help me but it's when i go home the reality is going to hit me!

Here i feel like i've really been looked after, when i said in my last blog they treat the whole person not just the chest i mean't it.  I've come here from Stoke with so many problems that have been ignored or never really uncovered.  I've had to show people what i've been doing for last few years and let them make changes where they see fit. 

Since i came here i was so overloaded with Sputum, i've never cleared so much and i've had so much help with that, i was taken for a little walk when i came in and little did i realise my sat's actually dropped whilst i walked around.  I knew that I couldn't walk around on the phone anymore, so if people ring me, i always call people back when i can sit down or i'm on my hands-free in car.  I'd get too out of breathe, now i know why.  So when they wanted to take me in to the gym in afternoons and they said they wanted me to use oxygen it was a little upsetting for me. I used o2 on treadmill for about a week, but now i'm feeling loads better i don't need it and i'm doing 15 mins instead of 10. 

My physio went through the routine i have at home, which consists of using my ultrasonic neb for my Imatropium and Hypertonic Saline and then if needed i use my acapella.  But i tend to shift most my sputum with the nebs and only use the acapella on occassions i feel there still more down there.  Having seen me do the nebs and clear alot of sputum with my nebs and then go on the clear nothing with my acapella she decided she'd like me to try the Bird.  This was something i'd never had opportunity to use before, at Stoke they have one and i've know Aaron uses it when he's in hospital but it wasn't something i was ever given the opportnuity to try.  As it always stayed in Aaron's room and he was the only one who used it, i'm not saying that in a bad way, i know he needed it, but here they bring the bird in and out for treatment and then other patients can use it also, they just leave all the tubes and mouthpiece which a for patient use in peoples rooms.  Therefore other patients on the ward can use it too!

The bird works in a way that when you start to take a breath in it forces air in, i would then take as deep as breath as possible and then hold it for few seconds before breathing all the way out.  On the breath out it would sound to me like i had lions or tigers bubbling away, so much sputum i just need to clear and it really did help, it made clearing sputum almost effortless except for the cough, but most time it came up so easy.  I would do 3 r 4 breaths and then the sputum would easily just come up. 

I found it so helpful for a week, i started using it last friday, the last few days though it hasn't worked as well but my lungs are so much clearer now and i can really feel the difference and i'm not choking on sputun all time, i feel alot better.  When i was admitted my lung function was 27% after a week iv's here i was up to 38% FEV1.  38/39 is my safe numbers, i feel ok with them but i don't seem to be able to keep it there and its usually what i make it too after the two weeks not after 1 week.  So i'm really hoping next week to get maybe to 40% with my lung function!! Wish me luck!!

I've also now started Meropenim nebulisers, they taste awful and make me cough a bit and i'm gonna have to be strict with myself to do the nebs twice a day at home. Hopefully the mero will help keep me well at home.

Sugars wise, i now have the CGMS device in my tummy, it's there till monday and will give 5 days worth of readings, then it will be taken out and the information put onto the computer, i'm having to keep a food diary and test my sugars just four times, pre meals and feed just so they can make sure the monitor has worked correctly. 

The CGMS (Continuous Glucose Monitoring System) is a little decice that they put in with a small needle, it didn't really hurt i just felt a small pinch. It has like a small sensor on it and then the white cap in second photo is like the memory that saves all the information.  Quite clever really!

Right my CF is main and most important part of my life i need to put my health first and get myself well so i can go home and sort my life out.  It's not going to be easy to go home and quite honestly i've become quite safe here and life is so much easier here.  I've not even had chance to tell you about the food and the snack trolley yet, you'll have to wait till sunday.  I'm having a trip home tomorrow to see my little puppy cuz i'm missing her like crazy.

She's so bloody cute i cant wait for a cuddle with her!! :)  She's my world right now!! :)

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