Tuesday, 18 September 2012

Too many emotions..

I'd like to begin this post to ask you to remember my friend Sam, her family, baby boy & friends in your thoughts and prayers. On Monday I heard the sad news that my lovely friend Samantha sadly lost her fight with CF. She supported me so much when I was poorly in hospital and we had so many giggles whenever we were in together..talking about turning our fridges in the hospital rooms into cocktail bars and laughing about silly doctors who asked us 'how many times we coughed in a day'. I'll miss you lots and miss chatting in the corridors, thank you so much being there for me. Breathe easy now sweetheart xxxx

Please please please sign up to become an organ donor, spread the word about Kalydeco and raise more awareness about Cystic Fibrosis..not enough people understand how serious this illness is.

I spent today at hospital, another clinic visit. Wasn't very nice going there after the news yesterday but somehow I managed it. And I think Sam must have been looking down on me and giving me good luck as my lung function had gone up! Which completely surprised me as I've been having lung pain since Thursday and was convinced I'd be back on IVs again. So to go and have that happen, weight is stable and everything go okay was such a relief! 
Paddy was flushed too (this basically means that they put a gripper in and put saline and heparin in which has to be done every 4-6 weeks to make sure that the line inside doesn't get blocked).

However, they wanted me to start back on nebulised Tobi which I was on over a year ago but stopped. When I had Tobi IV I ended up permanently dizzy for nearly a month and couldn't walk straight or anything! Anyway, I gave the nebulised Tobi a go..after 15 minutes we did my lung function again and it had gone down a fair bit which proved that my lungs didn't like it at all. So the doctor came back and said 'im sorry for torturing you, we wont give you that anymore..maybe next time you come back we could try it mixed with ventalin to see if that stops you becoming tight chested' so I thought that was a good idea :) But just as I was about to leave I started swaying and walking like a complete drunk! So ended up sat down for another half an hour as I couldn't stand up. At least my mum and the nurses found it quite amusing..hehe.

Mum, however, got me a lovely cake from Patisserie Valerie 

Too many emotions this week & it's only Tuesday

Here's a couple of pictures from over the past week.. 


  1. Hi Grace, sorry to hear of your recent loss. This diseas is awful and I cannot wait to hear that we have a cure for this awful thing. As far as chest tightness, I was wondering if you use hypertonic saline HTS?

    This really helps with my lungs clearing mucus and I feel like a new person since I have started it about two months ago!!! I suggest asking the DR about it if you have yet to use it.

    Wishing you brighter days from the USA!!!

  2. Yes I have used hypertonic saline..but only when I can stomach it! Most of the time it makes me cough so much I end up being sick! So have to be feeling okay tummywise to even attempt it..and an empty stomach! Haha :) I have DNase which is quite good for keeping the mucus thin and easier to bring up!