Saturday, 11 August 2012


So im back in hospital again... 

At my clinic on Monday i told the Dr i wasn't feel my best, i have been coughing a lot more, using my oxygen more, much more breathless and not having any appetite :( i didnt do my LF as i didnt wanna set my coughing off again, my back was in agony from coughing, iv pulled so many mussels its just complete pain! They said i should come in and i agreed but they had  no beds available at the time so i just had to wait until one came free, which was yesterday. 

So im in now, haven't started any iv's yet which im not sure why? i just gotta wait to see the dr.. as its the weekend its only the on call drs which are on, and there very busy all the time! 
So while im in there going to try and see if i an have my Transplant assessment early :) and also see if i have a gene called G551D. I asked them to check this for me. On of the cf girls i follow has this gene and shes just been put on this new amazing drug called Kalydeco. Heres a bit of info on it -

 A new medicine has become available. It’s called Kalydeco and it treats the cause of Cystic Fibrosis (CF). CF is caused by having just 2 faulty genes. There are different types of mutations of the faulty genes. Kalydeco works with the gene mutation that I have by fixing the fault. In America, this medicine has been approved and available for use since the end of January. People there are having remarkable, some even miraculous, results!

It has been a very exciting time for all of us who have CF and have this mutation. We have been following all the success stories closely. However it looks like we are going to have huge problems in getting this medicine to the people who need it here in the UK. It is very costly, and even though it saves lives and would increase the quality of life for so many, the NHS and hospital drug and therapeutics committees have to agree its funding. At the moment all the treatments that are available for CF treat the consequences of this disease. Kalydeco is DIFFERENT - it is a gene modifying medicine. It is a little blue tablet taken twice a day that fixes the fault!! There has been nothing like this for CF before and therefore NEW FUNDING should be put in place. There is no comparison between this medicine and what we have had available up until now!

So im hoping i have this and can try it out :) no harm in that! The girl i follow is on the transplant list and her LF was 14% when she went on it and she has been on the tablet for 3 weeks now and her LF is now 23% and she hasn't needed to use her oxygen since then either! its amazing!! She has now asked to come off the transplant list too! 

So my mission in here this time is to find out if i can go on this :) 

I would just like to say thank you to everyone who has sent me there pictures of themselves with there donor cards :) and also to people who have signed up :D Thank you very much! :) 


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