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I'm in the process of being switched over from Orkambi to Symdeko and am curious/ anxious to see what differences there are symptom wise. Please keep us updated! I hope it works out well for you!

I would highly suggest talking about our mental health and suggest that they find a therapist or someone that's a 3rd party that they can talk to. CF is isolating, depressing, and causes a lot of anxiety. It's a huge battle, but one that you don't have to fight alone. Having someone who can help...

I haven't had a transplant yet and have thankfully been able to turn my health around so that I'm too healthy to be listed, however I have gone though and still go though the yearly check in with the transplant tests and doctors. I got the full lecture, did all the reading, looked at what...

Yes, sometimes the results can show up as negative, but could be a boarder line number so they want to double check. There are some patients who also don't have the typical CF mutations in their DNA, but are treated as such. The second test usually looks at a larger range of DNA besides the...

What strength of hypertonic saline is he on(7%, 5%, 3%)? The reason I ask is because some CF patients can't tolerate it or have to use lower doses because it's too harsh for us and can cause our airway to restrict. This happens to me when I take the 7% and we have now bumped me down to the 3%...

Yes you need them now. That "oil" is fat. Fat that should stay in your body to keep you healthy. The difficult thing about CF is all the meds we take don't always have a relief feeling. Enzymes being one of them for some people. You still need to take them.

19 and 11 are way too low for CF. 40-60 would be considered borderline. I'm so sorry you're struggling with all this. I can't imagine how frustrating this must be for you. :(

To me this doesn't sound like CF but more of an immune issue. I know with small children, it's really easy and really common to get RSV which can lead to pneumonia. They're all viral and that's hard to avoid, but both which usually require hydration and oxygen even in adults. CF patients are...

From what I do know, the dose is based on height and body weight, not age. That might be why she got an adult dose

I know I saw in an article two days ago that Symdeko would be shipped and in pharmacies as of yesterday. However, since this is a specialty drug, going through insurance and getting prior authorization from doctors will take some time.

I culture pseudomonas mainly. I am anxiously awaiting for all the new drugs and i'm trying my best to keep myself healthy enough so I can be around to use them. Really excited about the nitric acid usage. We're upping my dosage of IVs again to see if maybe that might help. Keeping my fingers...

So after talking with my doctor today, it seems like my arsenal of IV meds is pretty much gone. So I was curious as to what happens when your sputum becomes resistant to IV antibiotics. We've already tapped into the Infectious Disease resources too. Wondering if anyone has reached this point and...

Yeah I agree with your friends...not good. With CF you also have liver disease, which drinking will make worse, and is something that could kill you if not taken care of and you can't heal your liver. I wouldn't drink to get drunk. That's just stupid and overrated and gets boring quick.

You need to bring this up to your doctor. Also maybe consider sleeping propped up to help reduce the intensity of your coughing fits when they start to come on

I'm sorry you're part of the CF community now. However, it's a good thing for them to be diagnosed later on in life. That means the symptoms are mild and that's a good thing. I wasn't diagnosed until I was 7 and didn't really need any medications (besides the preventative stuff) til I was 14...

The reason they're not recommended for us is because they have the ability to grow the bacteria that get us sick if they are not properly sanitized and dried. Which can easily go by the wayside.

Absolutely continue to get your degree. With the new meds that are coming out and our lifespan expectations rising, you very well could continue to work a long time. I say while you're focused and young and still have the ability and no real responsibilities (house payment and what not) go for...

Just remembered another tip from my ENT doctor who also specializes in CF patients...with the sinus rinses, add 2 or 3 drops of Johnson and Johnson's Baby Shampoo to it. It helps break up the mucus and clean it out.

When you say he's throwing up mucus...do you mean he's coughing so hard that it causes him to gag and mucus comes up or is it mixed in with vomit? The coughing so hard you gag is something that can happen when we're sick. It's running down the back of our throat and into our stomach so yes it...

I'm sure you'll hear back from the CF clinic soon, but until then hydrate!! That is the biggest thing! Especially if he's throwing up. Get some Pedialyte to help keep him hydrated. Not only will it help move mucus, but it will help flush out whatever bug he has.