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Don't know if this was already posted, but a new show on Fox called Red Band Society has a boy with CF on it. The show sounds like it is about kids who have lived at the hospital for a very long time (years?) and I don't know of any CFers who are in the hospital that long that are not very,very...

Did you talk to them about offering it for at home use? What did you find out? i would love to use it. I used it at the hospital but it didn't replace any airway clearance, like the vest or anything. It made me feel like I was getting more accomplished with doing my nebulizers. I kind of felt...

CF has definitely hurt me financially. I took a teaching job in a private, low paying school because I knew they would be more understanding about CF. if I didn't have CF I would be teaching full time in a much higher paying school. As it is now, I can barely work part-time. Also, we are paying...

As of January won't it be illegal to not have insurance, assuming you are in the US? Have you looked into what it will cost under the ACA? Are you sick enough to qualify for disability? Or healthy enough to work, even part time? Some places offer benefits to part time employees? Can your...

I just started my IVF shots on Saturday to prepare for my surrogacy. Today I started coughing up blood, which I have never done. Has anyone had this problem? I really don't want to stop the drugs!

Are there a lot of people that go into the hospital for the whole IV course? Is it because you want to or your doctor makes you? my doctor had a big talk to me today because I want to leave tomorrow. I like doing home IVs and HATE the hospital. He said that since home IVs didn't work it might...

Can I bring my own pillow? Or is that unwise given what bacteria may be around?

I am going into the hospital for a few days mainly to make sure I don't have an allergic reaction to the IV drugs meropenum and Collistin. I have been on IVs for over two weeks but they aren't working so I'm trying something else. I have a major fear of hospitals so I never stay in. I have...

I am 31 and swallow my mucus. The whole, isn't that grosser than spitting it out, thing doesn't work for me. I just don't spit it out. I will get a dime sized amount when needed at the doctor though. As long as it doesn't make her sick to her stomach then I would drop it. My doctor is fine with...

If you want to teach, I wouldn't necessarily count it out. In most schools, you are not responsible for writing curriculum. And yes, teaching 8 hours can be tough but in high schools you most likely wouldn't be teaching the whole eight hours. I taught full time for six years and now am part...

I am not sure if I am using the correct terminology but here it goes. We are planning to have a baby with the help of a surrogate. My husband was tested (I believe the 1500 mutation test) and he is not a carrier. With that being said, would you still test the eggs for CF before putting them in a...

I know that it is not a huge jump in lung function, but does anyone know if it at least keeps lung function steady, if not the same? While I would love an increase, I would be happy just knowing that it won't get worse.

I am 30 and I always thought we would have a child via surrogate. Well, we just started looking into it and I found out I have very few eggs left. My RE doesn't think it is CF related, which means I just have horrible luck. We are still going to try a round of IVF because my husband doesn't want...

My husband and I were starting the process of having a gestational carrier surrogacy and I found out my AMH is .4, meaning my number of eggs is very low. The RE suggested against surrogacy. We are devastated. Does anyone have any experience with a low AMH and having a baby?Or has anyone done a...

We went to Kenya and Tanzania. Like I said, everyone was very accommodating. I even forgot my pulmozyme at one of the camps and a driver drove an hour to give it to me. I did not bring my vest (used an accapella instead) but I could have no problem. Actually, because of how bumpy the roads are...

I actually went to Africa this summer and have never felt so healthy. I brought a battery operated nebulizer and I never had a problem with power or anything. It involves a lot of work, but it was a once in a lifetime experience. Obviously many other places are easier to visit but if you really...

I just realized I must have lost all my posts when I had to reset my password and user name. I used to be sue35, although I didn't post a whole lot. But I did visit everyday to get all the wonderful advice from everyone!

Does anyone know if you can participate in any of the Vertex trials and have CFRD? I was just diagnosed and I was wanting to do the trial later on in the year.