Search results

CONGRATS!!!!! That is awesome!! So, was it an amazing instant feeling once you came out of surgery? What was it like?

For those of us who dont notice any change with using Pulmozyme or other mucolytics to loosen mucus, it would be neat if there was something like a "super-charged" Mucinex pill or expectorant that is effective and affordable

I totally agree!!!! I usually dont need much lotion etc, but since starting Clofaz, my skin is extremely dry and cracked and i havent found any product that restores moisture. I joke and say my legs feel like i am a reptile.

Good to hear you are doing well!!!! Anybody on this thread gone to University of Colorado in Denver for transplant?

Hi, i have been on Clofaz for almost 9 months. The main things i notice on my end are the skin color change and i also notice that i get extremely dry skin from it. Any others get the dry skin??

Hi, i completely understand your concerns!! For people with CF, there are some bugs that we can get from soil. Mycobacterium Avium Complex, NTM, b.Cepacia, Mycobacterium Abscessus. I will research to see what others may pose a threat for CF patients.

Thinking of You and Your Daughter!! Prayers sent your way!!

My question as well..... If you were diagnosed with CF whether mild or severe, they must have identified at least 1 of the 2 gene mutations so call your Dr and ask for it/them. :)

Is there a way of knowing if you are heterozygous or are homozygous? Thanks!!

I agree with everybody's posts! And, his lung function is higher than mine ( i am 35%) so he isn't so low yet that he has to consider other options like transplant, etc. Sounds like a clean out and antibiotics could help him feel better as well!

I agree!!! We "seem" more human and normal so that's a positive!!! And.... I like that she explains what CF is and the show actually is informative for folks who dont know.

I also watched the first 2 episodes and i will continue watching. I think the part i questioned was when they were running thru the woods and she was wearing her portable 02 and they had to duck and hide for a moment and she never coughed at all from running but is on oxygen. Lol!!!! ;) I found...

How much are you asking for the system? Thanks!!

Vera, you hit the nail on the head!! I can totally relate to how you feel!! May i ask what Anti-depressant/s work for any of you? I hVe been on a rollercoaster for a few years trying to find one that helps/works. I am on Paxil now and only notice it helps with anxiety but not much with...

I live in South Dakota so i am a ways from you. How much does the system weigh? If somebody else is closer and can pick it up, i understand. I don't have much luck getting mucus clearance with my Vest, so i was interested in a system such as this Thanks!!!

Is either system still Available? How much are you asking? Thank you kindly!!!!!!

Hi!! Kalydeco is a pill. It is taken twice per day. I read that most take 150 mg

I did!! Thank you!! Any information i can get is helpful!!!

That's what i was told as well. BUT, if you add up an average of 2-3 Hospitalizations per year, at-home IVs, medications, appts, etc I would say that money spent on Kalydeco averages out... Especially if these are all minimalized by taking Kalydeco and health improves!!

It's already in the hands of my CF Team so all I can do now is try to collect as much data from others as i can. I was asked by the CF nurse to find out others' experiences/recommendations with getting Off Label Kalydeco because it is happening and others are getting it. Just getting all the...