Recent content by dbtoo2

if you want information try an AI like Claude and enter something like this into search ' i need information on a genome c.2657+2_2657+3insA in relation to cystic fibrosis. is it considered a nonsense gene?'

you post has been out there for a while now. did your issue get resolved? nobody here can tell you what you should do for you. they can tell you what they did for themselves or for a family member, but what to do for you is up to you. I observe that you have lots of fears, and fears can...

Any of the old timers participate in this? Aging with CF

IMHO - I believe the recommendation that is followed is two of the one pill in the AM and 1 of the other pill at night. Then you see what side effects you get and decide (of course with the doctors objections) you figure out what works best for your situation. you can also google search it...

risk vs. reward... https://www.fda.gov/drugs/development-approval-process-drugs#FDA they approve based on 'cherry picked' studies submitted to show efficacy...

I don't know what your everyday language is, but English is obviously not first OR second! GO TROLL meta, or X or instagram, you'd find a much easier target base over on those sites.

doc could have a picc line placed and you could do antibiotics at home.

i took it for a while, but found it was not doing anything helpful for my body! I'm always 'pre-diabetic' on their tests. Which I have learned means we take a wait and see attitude not a treat it like you got it one. In my humble opinion, the less drugs i take the better off i am. I'm down...

Every insurance company has an appeal process. You can start with that. Another consideration might be Healthwell Foundation, or one of the other organizations that provide funds for CF and other diseases. They may be able to reimburse costs up to their max amounts (depending on your income...

This site used to be a successful place for people with CF. We had the occasional trolls that joined, some with disease by internet proxy. But of late, this amount of spam created, moron's trying to sell products, sex, it's just sad.

AI is a program. It's at the mercy of its creators. The results will only ever be what the content writers say it will be. Even when they have enough power and memory to begin to generate their own neural network connections, STILL it will only do what the originators permit. and THAT is...

That's not true! You won't get more sick because you stop working. I do MORE today, Because I stopped working. Increasing difficulties is a way of life in a genetically degenerative disease. You cannot always avoid issues. But many are, depending on many things to include, but not limited...

all these years... i'm still here and still think about those we've lost... :cry:

I went with the medicare advantage plans. you have to watch those though, you might need to switch plans like i did because the plan i had dropped my CF clinic hospital's pharmacy from their plan. There are multiple copay assistance options. do a search for copay assistance programs. i was...

Yes. Pharmacy decided to swith me to 3% normal saline for injection in 15ml vials, as if it was the same thing! Then they lied about it and said it was what the doctor had ordered for me. I've been told there is a 3.5% hypertonic solution available.