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I did a modified schedule for 10th-12th grade. I didn't take a first period class and then made up two to three semesters worth of work each summer with online classes. It was a great decision for me and I would highly recommend it. Cutting two classes would have led to a delayed graduation for...

That's really interesting - I had a similar experience though not as severe. I was also on TOBI for about 10 years and a year after Cayston was approved and I had added it to my rotation I noticed that for 3 TOBI cycles in a row I was feeling congested/short of breath/sick so I went off of TOBI...

Pharmaxis has not given up, they are going to run a trial for adults only, but not sure if there's a time frame: http://www.pharmaxis.com.au/company-highlights#profile1

Yes - there are different categorizations of "resistant." I believe I am technically resistant to Colistin and Cayston, but they both work. You can be sensitive to an antibiotic, meaning that it should be totally killed; resistant just means it isn't all killed. I think there's some sort of...

It sounds like allergies/asthma could be a large component here, so maybe getting her checked out by an asthma and allergy doc would help. Also, when she's ill doing more than 2 CPT rounds a day is really important. 3 might be enough, but you may even need to go up to 4. It doesn't matter how...

His activity level will partly depend on how comfortable he feels - obviously rough-housing is out, and all water activities are probably out as well. With some PICC lines my arm was quite sore for awhile. You will probably be doing 2 antibiotics, each 3 times a day - that's sort of the standard...

Very well said, Steve - my thoughts exactly. And I never heard a statement from the doctor, only from the family and misinformed media. I wish that they had gotten out the message more clearly that the real issue is a lack of donors, NOT the evil organ allocation people. I do think that redoing...

I wouldn't worry about it much. My body always does a really good job of telling me how much salt I need. If I've just worked out, or have been in the sun all day, I have to add a lot of salt to my food before my body tells me it tastes salty enough. And then when I've had enough, my body will...

Losing salt quickly is kind of the hallmark of CF...our sweat is saltier than most people's (which is how they diagnose CF), meaning that we lose more salt than most people, and then crave it.

Inhaled colistin has never given me a problem; I do 75mg twice a day for a month rotated with Cayston. IV colistin does give me a tingling in my lips/tongue if we go above 50mg for my dose, so that would be something to watch out for, but like I said inhaled has always been fine.

I have nasal polyps for years. When I was 3 I got really, deathly ill and I had sinus windows surgery; after that I probably had another 25-30 surgeries, last one was in 2009. I think polyps are something that he may outgrow, may be something that he'll need to get removed once and never have...

I've never figured out how to bring up mucus (I'm 19). I sometimes am able to when I'm sick, or just randomly, but I really wouldn't worry about it too much. Throat swabs are adequate, it's clearly a pretty common problem, and swallowing it isn't going to hurt you. If she's capable of coughing...

Actually, if you have too many enzymes it can cause constipation. I spread the enzymes out through the meal; the answer to when to take them depends a lot on who you ask though. Find what works for your body would be my best advice.

I had no idea how exciting this was, I may be participating in this study!

Do you use other inhalers? I use Symbicort along with Ventolin and Asmanex; I've had some problems with thrush but it's probably just from the multitude of inhaled drugs. If you're not on any other inhalers it could certainly irritate your throat; other inhalers might be better, there are...

I just switched to an adult center from peds but nevertheless didn't do so blindly - I definitely interviewed my doc. My advice: You don't just want to talk to a social worker; you want to talk to everybody that will be involved in your care, especially your doctor. If you hate the one doctor...

Technically I'm still sensitive to Levaquin and Cipro, but they give me seizures, so I haven't been able to use orals since age 12. (I'm 19 now.) Since then I've had several rounds of IVs, but I started working out a lot about a year ago and if I can just make it through the spring, I'll make...

I know that I went to the nurse's office for awhile, probably K-3. Then we went through the self-medication procedure and from roughly 4-12 I carried them myself. It may help to be very clear that these are not drugs that anybody else would be wanting - in other words, your son isn't going to be...

I had the same issue with TOBI making me sick! I am on inhaled colistin, 75mg 2x/day on a month on/month off cycle. It's also one of the drugs in the IV cocktail we use when I'm on IVs. The inhaled doesn't give me any side effects; IV can give me numbness of the mouth. We found that we can...

Feel free to message me any time as well, I'm Emma, I'm 18 :)