Search results

I completely agree! Ineed to get my butt moving and exercise!!!!

Can anyone tell me your experience with transplant at HUP? I am nervous about the thought of transplant there. I want all the good and the bad experiences.

I am being told that I should get started with prelim transplant testing, however, after seeing friends go through transplants, I am not so sure I even want one. Quality of life after is not great. Chances of survival are poor from what I have seen and the possibility of a 2nd transplant may be...

I am just wondering what others are experiencing at this #. It is starring to get difficult to live a normal life at this point. I have chest tightness, sob, fatigue all the time. Not able work more than 3, 8 hr shifts. Feel like i have a chronic illness for the first time ever. My sister has...

female 38yo 4'10" 96lbs Fev1 46% Double df508, psuedo and mrsa

Ok, orkambi day 5. Finally I can breathe again. It has been truly "hell week" as they call it. Aweful chest tightness and sob from 2 hrs after the initial dose. I was using albuterol nebs 4 to 5x a day to get any relief. Hang in there guys, the s/s will dissipate!! My fev 1 was 47% a month ago...

I started Orkambi 2 days ago. I had chest tightness and extreme sob within 2 hrs of taking it. I have had to use my albuterol nebulizer 2 hrs after every dose i take and then one in between. It is an absolute aweful, scary feeling. I have an fev 1 of 47% and i am 36yo. I am going to stick it out...

Would love to help Charlotte, I'm not quite sure what you are asking us to do. I would love to help, but what do you mean by the isolation of CF? Also, if you could give more details about what you are looking for exactly. Thanks, Jen

Well I hope I can be of some help! I have CF and have been a nurse for the past 12 years. My cf doctors never discouraged me from doing so, in fact I have been an Emergency Department nurse for the past 7 years. Now, I wouldn't recommend working in the ER, only b/c it is always of risk of being...

I used the podhaler for 2 weeks and was having wheezing and bronchospasms, along with long coughing jags afterward. I had to revert back to the nebulizer. Did anyone else have these symptoms?

So it seems to occur with humidity or if exercising. My armpits produce a bad odor that my husband loves to point out! Showering doesn't help, clinical strength deodorants don't help, what to do? I am assuming it is either my diet or pseudomonas and MRSA. I have 2 sisters and one has CF and she...