Tuesday, 8 February 2011


Well i am definitely getting better, slowly, slowly this time. You always wonder after a bad bout if things will quit be the same afterwards. I think I can probably safely say no, but things seem to be changing so rapidly these day, sometime change comes with out a batter of an eyelid. I believe the new addition to my life will be oxygen at home, I have been heavily dependent upon it this admission and even before I thought its presence in my life was possibly needed. How do i feel about oxygen at home. Possibly relieved, I struggle so much with walking around, extreme breathlessness and stupidly high heart rate that sometimes makes me feel as though my chest is to explode. I hope that oxygen will help.

Slowing down the recovery rate is the nasty cold I have managed to pick up which leaves me in a right state when I wake, very bad blocked sinus's and I end up having chucked my nasal specs across the room as there making my blocked nose feel alot worse. It is a tricky business keeping these things on at night.

Also this week i have had a fair bit of media attention surrounding this blog, I have had a article in the express and echo which has led to ITV contacting me wanting to do an interview, I think this is really exciting, iv featured on the news before and I think it did alot for cf awareness. They also want to interview my doc who came in here asking me what id got him into, with a little smile on his face. He a great doc and a good sport so hes quit happy to help, he also volunteered my cf nurses, one of who was there and said she best have plenty of notice so she can sort her lippy out, lol.  Being ill is always made alot easier when you have a reliable health team by your side, having known them all for so long as well it also makes it easier to talk in a frank way when your perhaps not so happy about things, something I'm very good at.

Also with regards to the ITV interview the hospital communications had to be contacted to let them know of the possibility of filming in the hospital and the whether it was ok to interview my doc, with regards to privacy and whether it would interfere with my treatment, my doc said he realises its very important to me and gives me something to focus on which is very good. The communications people said i could be letting myself in for alot more than i realise and it could be a great intrusions on my life. I understand this, but if I'm not to let you all in then how will you ever understand what my life is like with cystic fibrosis and trying to get on the transplant list and then waiting for those all important lungs. I cannot simply expect people to understand if I'm not willing to show them and that would be a great contradiction on my part. So here i am writing my blog letting the world in, if the world doesn't like it  i can then blame it for its ignorance.

Other things on my mind, Iv started to get the itch feet, sitting around in hospital is not my cup of tea and I have to say I haven't seen much of the outside world but today we ventured out to Stu's parents, its nice just having the homely and its made me feel alot more sane. I'm basically planning for home for Monday the 14 valentines day. The team thing another week of IVs on top, which is fine with me, I'm so used to home IVs and the only time i feel half decent is toward the 2nd week of IVs so another week of them mean possibly a whole week of feeling reasonably OK.


  1. You're doing a great job raising awareness, Kristie! I'm so glad you're starting to feel somewhat better...

  2. Love the flower hun. That's fantastic news about ITV, this could really take off! Night night, Elly xx

  3. Great about ITV! Thanks for letting us into your life and all about it! Its so interesting to me because I'm not at the transplant stage yet but knowing all about it prepares me:D x

  4. Hi Kirsty I posted a comment on here earlier but I'm not sure where i posted it or where it went.... Rubbish at this, so I apologise I'd u end up reading my message twice, I just wanted to let u know that I really enjoyed reading through ur blog so far u certainly have a way with words u tell people how it is which is wot more people need to b aware of how hard it is living with such a life threatening disease, my daughter Millie is waiting for a small bowel transplant she is only 3 so she doesn't really understand I think that's probably a blessing, I have had lots about u but never met u, I'm Stuarts 2nd cousin, I just wanted to say is if u believe in urself u can make anything happen.. U already know this because of all the marvellous things u have achieved!!! Keep thinking positive lady ur time will come
    Lots and lots of love
    Emma Sandford

  5. Hi Emma i have heard alot about you and your family, Millie sounds like an amazing little girl, children are so strong, I always knew i was different but at that age i was totally happy despite hospital and illness. I hope that puts your mind at ease. I so hope that she gets her call soon and look forward to meeting you at some point, Hope you see this message.

    Lots of Love