Wow that is eerie you have the same mutations as my daughter- the rare one is G551D- that is from the Irish side of my family- We are probably related somewhere back there--- there are only a handful of that mutation in Australia I think...
We did the trials ( study ) kalydeco- sadly my daughter got the placebo- so a year struggling by on not as many meds -As she should have been taking
that is what you have to do-for those darn clinical trials-
and then 11 months 23 into the one year study she got a bug and one month lather she was on life support-
It was terrrifying watching her on ECMO - I don't like to think about it much- but it was incredible and her survival for a record 8 weeks taught the intensive care unit a lot - they pushed it- she was hanging by a thread when the lungs finally came up - was a very difficult transplant as she nearly bled to death - however she is ok - it took two years of rehab to recover- long long story---
A routine transplant is not anywhere near that difficult-
I have been fortunate enough to see her grow up into a lovely adult now- she looks normal - she did lose the sight in her right eye through damage to optic nerve with so many surgeries- however she has adapted.
Life has been hard for her she missed most of high school due to hospital and has done some tafe, however she hates it- currently looking to just get a part time job in retail - she can physically manage that- so almost there-
I am so sad to hear you lost your twin brother- that must have been so hard- although we do get used to the struggles-
you sound very level headed- and yes excercise and food are the keys...
We go to ST Vincent's she was transplanted there- and has probably been one of their biggest cases-
They are good.
If you go more often and try to stay up to date with medical discoveries and treatments and the network of CF's it is probably a good idea- by the time you may need a transplant if you ever do things will have advanced the treatments get gradually better as they learn more.
Wow so funny just one little comment - take care of yourself and remember we have this thread to continue if you need to ask anything else
