Friday, 11 March 2011


Finally I feel comfortable. The last few days I have felt like a bug is crawling under my skin, restless, tired. Unable to rest and sleep felt all wrong. My port a cath was sore and aching and longed to be needle free, I wanted to scratch the skin and feel the shower on it. Insteen of it being covered in clear sticky, itching  and unable to wash near it, I cant get the dressing wet as it becomes an infection risk. More bugs would not be good. So I had my needle out a while yesterday and then out a while today as it was having a few problems with strange leaking from the sight, im unsure why it does this every now and then, but the line o gram shows it is fine.

My lungs are comfortable, far less pain then normal, o2 use is down and im less breathless. I have seen the 02 nurse today, Im getting another cylinder for home, one for upstairs and one for downstairs, far more logical, im not getting a concentrator yet, but we will see how it goes. I'm also getting 4 portable 02 cylinders, not liquid oxygen but again see how it goes. Apparently im not to get excited when looking in the 02 booklet as theres a device that turns air in to 02 and its lovely and small. but i cant have this as they don't do it anymore. I may see about how i require one of these, as i feel it would be very usefull out and about.

We are planning for harefield, Im going up sunday, with mum and stu in the car. Having lunch at anne's a family friend, then off to harefield a day earlie as im still on ivs, so iv been 'transfered' technically. Then monday the tests begin. Once i finish at harefield, I will be going straight back home, prehaps a 3 day IV rest or carry them on, but im probably going to be on IVs permently from now on.

Lung function, I havn't done lung funciton since i came in and im not doing it as i go out either, they have decided its un nessicary, my treatment isn't based on my lung function anymore, its based on how i feel. it only makes me feel depressed, partly because its shit, partly because its not always an accurate measure of how my lungs feel. So as far as i know my lung functions anywhere between 18% my lowest ever and 30% my highest iv been able to achieve whilst semi stable.

The weekend after harefield I have the lovely Elly coming down to stay, shes one of my besties, she also happens to have CF and although we arn't suppose to mix we do because our friendship is worth the risk of cross infection. But we are very carefull not to contaminate each other with our bugs. Which seeing as they arn't airborn as long as we don't cough on each other and stick our tongues down each others throats we shall be fine. Just to say, just because i mix with another cfers, does not mean i advise it.

Daybreak, yes, after my ITV westcountry feature, i have now been featured on daybreak this morning, they used the same footage as i have been far to ill to travel to london, my doctor was not keen on the idea at all. Here is the link to my ITV westcountry piece. I havnt got the link to the daybreak piece unfortunatly. Im also on BBC radio devon tomorrow morning at 7:20 am and 8:20 am I don't know if its the same interview repeated or split, so i suggested listening to both if you don't mind that hour in the morning. Its 103.4 fm or listen online.

On a somewhat emotionally note, Im so proud my message and story is getting out there and that so many people are starting to think about organ donation and what it actually means. Means to them and to those who would go on to recieve organs. It actaully brings a little tear to my eye. So thank you if you have signed the organ donor registar, thank you for all your lovely comments I read them all.

So i think my next blog will be whilst im in harefield or possibly after, I truely hope it will be good new imm typing on here and that i will be on the lung transplant waiting list or get a date for when im active on the list.


  1. I think it's mad they're still not giving you a concentrator!!

  2. It's so nice to here u slightly more cheery which I know is down to how u feel each day and that is how u have to take things!!!! U certainly have been busy with ur awareness lately I can't even begin to tell u how amazing it makes me feel to know that people r listening to u and taking notice u r really such an amazing person and wot ur doing is brilliant especially wen most days u feel so rubbish... U carry on and I just hope people take notice and sign the organ donation register.... It was lovely to c u the other day Millie has taken quite a shine to u.... She wanted to come in with another present bless her!!!
    I'm sure I'll speak to u b4 sun but if I don't I just want to say that ur not far from my thoughts but I'll certainly b thinking of u next week and i look forward to hearing from u
    Continue to take things easy though eh???
    Massive hug
    Emma and Millie

  3. Helloooo..... Good to see you a bit more chirpy earlier - personally I think it's because you are getting to see more of the IBox.... a plus point for anyone surely?!

    See you tomorrow hun x

  4. I watched your West Country piece and it was brilliant. I hope lots of people signed on to the donor register. You've done a fantastic job at getting the message out there :-) xxx

  5. Hey, its Rhianedd (the dark haired medical student who came to see you!) Just to wish you luck with the assessment :-) let me know how it goes!!!! Watched the west country piece - uber fab!!!!

  6. Hi Kirstie,

    We have got the Daybreak clip up, here: