Well iv found out i dont have the Gene G551D, i have one common one and a rare one, not sure on there names but theres no drugs been made for them ones yet boooo :( But they told me when there is il be able to do a drug trial for it, so hurry up and make it please!!!
My infection leverl has gone from 66 to 23 :) so hopefully another couple of days and im going to ask if i can go home.. My mum and brother are going away for a few days and i wanna try and sneak there with them lol
The weather has been so nice this weekend i hope you have all enjoyed it! I only packed jeans and leggings to come here with so i was sweating yesterday!! lol I went for a few walks, much to the disgust of the nurses, as i had to come of my drip (im on it 24/7) my Doc in the week said i could have the weekend off it and come and go as i please... But that dr wasnt here this weekend and she didnt make a note of it. So after alot of stressing the nurses let me go out for a bit, i only went to the canteen with the family. The nurses were making it out as a really big deal. Then when i came back they tried to put me back on it and i said no. Ben was coming up later and we wanted to go out for a bit. The nurses were telling me no i cant go back out, i was getting so annoyed at this point i asked to speak to the on call Dr and he just said its fine for me to go out, and asked me why were they making a big deal out of it, so im glad it wasnt just me thinking it. So after me and Ben came back they wanted me back on the drip, Im on Cef on a drip 24/7...Just before she put me on the drip she pushed 3gs of Cef in me then started the 3gs drip... I kept thinking that doesnt sound right, so i asked to see the on call Dr again, it was a different on this time and i told here what the nurse done, she got my chart out a looked it over saying i should of had them at different times not both together!! She stopped it and told them to start it again in 4 hours time... Im sooooo glad i ask about it! Really do not like that nurse, i miss my other nurses on the other side of the hospital lol
something random happened this week ... I was just sitting waiting for ward round to see the doc and one of the Cf nurses came in and said 'you can say no,but we was wondering if you would like to be in a documentary?' Oooo i got excited straight away and said yes!!!! She said the producer is outside and would like to talk to me, she came in, she looked really young! like my age, she didnt stay for long but just asked about me and how my life is then she said she is going to come back next week to explain more about it. She left an the Cf nurse (Lindsey) came back in and said it will be the programme One born every minute and 24 hours in A&E.
I got so excited and rang my family, but since then iv been thinking if i should do it? Im mean i really don't mind sharing everything with you on here because you read it you cant see me and you don't see me struggle with walking or coughing until im sick. So i keep thinking do i really people seeing me like this? Its such a big part of my life il be letting people watch. I know it will be advertising for CF and Organ Donation, iv just got to think about it.... Il have to look my best though which means shopping!! I don't mind that part lol So il see the producer next week and talk to her, see where that takes us!
So il update again in the week to tell what happens :)
215hours Until my transplant assessment!! :D