Recent content by sroeseler

So according to your included article the E92K strain is effected positively by orkambi but the benefit is very minimal and I would assume the dosage to have beneficial results is too high for them to consider it beneficial for your exact mutation pairing. Orkambi is already only marginally...

Common treatment would be remove the collapsed lung and fill the cavity with ping pong balls to fill the cavity so your chest stays open. Otherwise you may not be able to receive a double lung transplant later. I have heard of ppl with collapsed lungs and 4-6% blood flow getting on Kalydeco and...

Yes the body always trys to heal itself but if your at a point of needing a transplant the damage is so great that you'll still need new lungs. If you didn't need a transplant before you should see gradual improvement but it takes a very long time for lungs to heal

OK so kalydeco does not reverse lung damage. It can significantly slow down or stop any future damage caused by defective CFTR genes. It is not a cure, if at any time you stop taking the drug your DNA is still faulty and your cells will not function properly. With that said, if you have enough...

We have two boys and an 80/20. With the pharmaceutical copay programs we're at about 2k or 3k, depending on antibiotic rotation, out of pocket per month including my ridiculous insurance premium of $1,400. Something new we've just learned is that your cf center hospital pharmacy may be a non...

OK well first off I really sick at this emotions things myself. I was raised not to show any, to suck it up and "be tough", so even if I want to cry I don't. That sucks and really only makes its worse... It's OK to cry man. It doesn't make you weak, just makes you human. I'm not saying run...

The Pseudomonas your more likely to get from your drinking water, it's found in tap water and bottled water. Staph is also extremely common and more likely to be picked up in public places than from your dog. If your concerned I would suggest making sure you keep your dog groomed, clean and up...

U can crockpot one meal, set it up in morning then it's ready at night. When other meal is cooked. There are lots of crockpot recipes and you can rotate who eats the crockpot dinner

We just have it listed in ours with an note from cf center that States there will days he is late due to treatments or excessive absences that are excusable with a note from us explaining the fever, heavy cough, tiredness,ect

I'm not a doctor but I have two boys (4 & 7) with double d508. The breathing treatments and vest therapy they use day to day are preventative but also used as treatment when they have an infection along with IV antibiotics. The reason we do treatments everyday (3x a day healthy, 4x to 6x a day...

Were an hour from the cf center too, it can be a pain but being with a complete staff that specializes in all aspects of cf is well worth it plus being in the center on the pulm floor they are also consciously trying to keep you from picking up other bugs a normal hospital doesnt typically even...

I'm surprised they even saw you, we've always been immediately transferred to cf center, we don't even bother going anywhere else anymore, everyone is too afraid to treat.... you can check yourself out anytime you like, just head to cf center

I think with a mask is no big deal. But I have two sons with cf that spend every day together and they don't seem to share bugs ever, they always grow different and are sick at different times they don't wear masks around each other just when in crowds or confined space with other people

My 4 year just had his first wed. His o2 lvls never showed any decrease but he couldn't beat a cough and after a few antibiotics we got an xray to find one lung collapsed. Long story short. He had a bronch to see of we could help clear out and the lung inflate. We were told it's like a mud...

Actually I'd like to ask where about in the Rockies are you coming from and why are you going to Florida. I was under the impression the colder dry air was better for cf. We have been working our way toward the Denver from the gulf coast and the drier air here in Dallas has seemed to be a real...