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Hi, First of all, I'm so sorry for your loss. Second, I live in Michigan, and currently drive 2.5 hours to go to the CF clinic in Ann arbor at the university of Michigan. There is a clinic In my city on the other side of the state, but after having sub par care, I called the u of m and I went...

In the old days we always did "postural drainage" with our manual percussion therapy. I would think there is a reason they don't do it anymore. Maybe not shown have good enough affect? Very good question for dr and pt

I'll look at one when I get home. I feel like it is more than 3mls to a vial. Also my doctor always warns to create as little bubbles/foam as possible. Add the water super slow to the vial and super slow to the neb cup

I work in HR. There are only a few people who see actual names. They are out HR VP and the benefits manager. The rest of us, who do a lot of the regular day to day work don't see that. I see a lump sum each month of what we spend. We are self insured, so yes, if something costs a large...

I'm in the same boat. 31- manage to work full time, and have a social life. But I'm exhausted when I come home. To the point where doing treatments doesn't cross my mind. I've set alarms, I've kept a chart. Nothing helps. Treatments are exhausting and by the time I get home there is no...

GINA stops a company from making you take a genetic test for them. I would ask why it is necessary to the position. Seems a little strange, unless you are in contact with people who can't get the germs we carry. Pre employment drug screens shouldn't test for anything that isn't a job...

^^ that is right. If an employer had more than 50 employees it is a federal requirement that they follow this law. The hard part about it- you have to make it to one year of service before you qualify. For me it's why I've stayed with my current employer. I'm not sure I can make it a year...

Try going into a temp agency like manpower. They will sit you down and test your typing and such. Try getting something as simple as data entry or even a factory job. While you do that look around at what others are doing in that business, see if there are things you are interested in.

I've never had any problems. I usually wait until I hit the 1year mark, so you get FMLA. I work in HR, I'm the one who administers the FMLA. we are not out to get people or scew them out of their jobs. There are new regulations within the ADA that make it 100% harder to terminate someone due...

Have you talked to the social worker of the clinic you will go to in AZ? I would think they would put you in touch with the proper dept in az. From what the az dept of health OCSHCN says they cover kids and even adults with CF.

I'm 31 and did the same thing about that age. Finally figured it out a few years later. I think it's just something each of us has to do. It's hard to have cf control your life and harder to come to terms with it. You are doing good Mom. Try not to let it break you. My mom still bites her...

There are about 1500 known mutations. They usually start the first panel with a smaller set of the most common mutations. With those symptoms I would suggest finding your closest certified cf center and ask for further genetic panel testing. Check cff.org for the certified centers. Hopefully...

I'm 30, in the early 90's we used to do a cf summer camp. Cepacia vs non cepacia were seperate weeks. We all went home sick. I can't imagine the strange germs we all passed to each other. They stopped doing them in the mid 90's for that reason. My question would be- could the parents even...

Assuming both kids have the same parents- wouldn't son 1 and son 2 have to have the same cf genes? One from each parent? Meaning son 2 should have that same variant as son 1, if he has cf

I do 250mg everyday. I'm terrible at remembering mwf, so everyday is a better option for me

Finding doctors you feel comfortable with is important. I was lucky to be born at a hospital with an accredited cf center, and they were great through my childhood. When I was 20 they got a new adult dr, and I felt that he wasn't invested in his patients. Now I drive 3 hours to the other...

^^ my stomach was way more of a problem growing up. Zantac was the answer back then, now I'm I'm previcid. Acid can stop your enzymes from working properly, was the explanation I was given. I have also had the obstruction problem, often called dios. A stool softener is often the answer. I...

Maybe I'm wrong, but besides the vortex drugs, treatment isn't based on your genes. Symptoms aren't even based on your genes. Besides that, I think you are correct, there is a reason we have doctors monitoring us. They understand the underlying implications of treatment. There is scientific...

By the second day I notice my mucus coming up easier and my sinuses draining. My only problem is that two days after I'm done the mucus is back and the sinuses fill back up. My dr and I are trying 2 weeks on, 2 weeks off, which helps me from declining as much between doses.

I've never had an interaction either. Cipro will wreak havoc on your stomach tho, eat before taking it, even then it still messes mine up. It always kicks the bug for me!