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From time to time my appetite can fluctuate to where I will eat everything and anything, or i don't want any food at all. My doctor put me on Marinol and I've had no problem eating and gaining weight. It helped me even when NG Tube feeds wouldn't work, it's saved my life a couple of times...

I wasn't diagnosed until I was 7 and I know some adults on this site who weren't diagnosed until they were adults or what we consider to be much later in life (not at birth). The symptoms you're describing, while yes people with CF suffer from them, doesn't really sound like you personally have...

When I was in 2nd grade, one of my friends laughed at me and told me I looked pregnant because of my CF belly. It did bother me, and I still remember it all these years later. I know she wasn't trying to bully me or be mean, she was just a little kid with no filter. But since then, I actually...

I suffer from seizures on top of my CF but mine are well controlled and not due to a med. That being said I've never had an issue in the past when I was able to use Tobi. If you haven't, I would highly suggest you follow up with a neurologist to address these issues. Especially if Tobi works...

My doctor was telling me that a lot of CF clinics who see both adults and children at a children's hospital, will soon be transitioning CF adults to an adult hospital when admitted now. While part of me is excited that, Yay we're living longer and are going to be recognized in adult hospitals, I...

I know this is a hard and stressful time for you. The good news is you're seeing the right people to figure this out! Keep us updated so we can help you through this process and answer any questions you have.

If your son does have CF then he also has asthma...they kinda go hand in hand and are treated with the same medications. The severity of it depends on him of course.

I was diagnosed at 7. My parents have always been about routine to keep things organized and what not. It's really been beneficial towards my life and my CF. The best thing you can do is establish the new routine immediately and stick with it. This way your son will understand that this is how...

Sorry I need to clarify then. Both NAC vitamins and Mucinex( the over the counter drug) are supposed to help with getting rid of mucus. I've seen people who will take one or the other. Wondering which they would recommend

My parents, my whole 32 years of life, are always saying that if they could take my CF from me so they have it, they would. I always respond the say way, "I wouldn't give it to you". There is nothing in this world that would make me give my CF to someone else. I know that sounds crazy, but...

Depending on your son's mutations and symptoms, preventative therapy could be a number of things. One would be an airway clearance device(vest, vibralung, Afflo Vest), the newly approved CF meds Orkambi or Kalydeco, possibly an aerosol or inhaled treatment (like albuterol some sort of asthma...

So from doing research on here I've seen that NAC vitamins are a common drug recommended for CF patients in Europe. I've also seen that several people take Mucinex here in the US. Does anyone take both or would recommend one over the other? Just curious about what you guys think

I stopped working (which was part time) around when I was either 29 or 30. I kept getting sick and was frequently in and out of the hospital every 3-4 weeks. I made the choice to stop to see if this was my CF that was getting worse or if the actual work environment (retail) was making me sick. I...

I haven't really thought about that either and I guess it depends on your CF center. Mine has 3 different PFT testing rooms that are closed off between patients for a certain amount of time to make sure the room is clean and fresh air has been circulated in. I know it's a requirement that the...

The ringing in my ears is what I think was the start of issues. I lost mine due to IV Tobi. What I remember is that it started making my ears ring while I was doing it but would stop at the end of my two weeks of IV therapy and finally would go away. When the ringing didn't stop after my IV...

Thank you guys! I appreciate your feedback!

Congratulations!! I hope you have a speedy recovery and enjoy your new lungs!!

For those of you who are married or living with someone else, what kinds of precautions do you guys take to avoid getting sick from someone else? I still live at home but this conversation came up with my BF who we think got me sick. While living at home I know how to keep things clean and am...

I take Marinol which is the prescription version of Medical Marijuana. It has saved my life on many occasions. While I love eating, there are times when I just don't appetite and there isn't anything you could do to get me to eat food. Sometimes this feeling can go on for days, especially when...

Any one of the baby bottle sterilizers will work. The ones with a dryer are more convenient in case you forget to take the nebs out of the sterilizer to air dry.