Today I haven't coughed up as much as I thought I would but at first felt quite tight about mid day and then manage to get some crap up and then this evening iv really felt tight chested and been on my oxygen since about 8pm after having a bath it completely wiped me out...I'm hoping it's the little kalydeco working its magic!
Like I said not much to say hopefully will be a little bit more interesting 2moz!
That's all
Love love
4,977 hours on transplant list
Hang in there! My daughter was on it for one month. The first few days, even a few weeks, can make you wonder if it is working because you may clinically feel "worse" in some ways while purging the old gunk out of your system. She had some tummy troubles the first week as well. But it is working! My daughter didn't think she had improved very much, but when she had a PFT, her FEV1 was up 11% in just 28 days! She does not have G551D, so we are fighting insurance in the US to get coverage again for her. We're all rooting for you!
ReplyDeleteTeresa i really hope you can get your daughter back on it esp as even though she hasnt got the right gene it improved things so much! got everything crossed for you!! xxx
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