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My first camping trip was before my first birthday. I can count on one hand the number of camping trips I have missed since then. I remember to stay hydrated; maybe enlist the help of some of his friends/hike leader to keep your son, and everyone hiking, hydrated. I have been swimming in pools...

I completely understand what you feel. I've always been the person who would do anything for anyone, to be helpful, even if I didn't want to. I like helping others; it makes me feel good to think I've lessened a weight for someone else. So when I get sick, I feel like the world's biggest...

I was diagnosed at 10 weeks, so I asked my mom for her input on how life changed. She remembers feeling worried, but also knew that she and my dad wanted to let me live a full life. I was never stopped from doing anything. We went camping in Yellowstone before my first birthday. I've gone...

I can't tolerate it if I do two doses of 7% everyday. I cough up blood. Instead of completely getting rid of it, I do two doses three days a week. On Tuesday, Thursday, and either Saturday or Sunday I do my hypertonic, with Monday, Wednesday, Friday, and one weekend day being rest days. I seem...

I think you're missing two pieces. I'm pretty sure there are two right angled black pieces, one for each side, that the tubes should slide on to. I know the pink vest is one of the washable ones, but I've never actually seen one in person? Do they have two parts? The pink outside that maybe...

First, it's my belief that if people don't want to understand the basics of the disease I have, they will never be counted as a friend. They barely make "acquaintance." As for missing church...is there another service you could attend? When I was younger, my family attended on Sunday mornings...

What are the circumstances around the gagging/nausea? For me, when my MRSA is starting to cause problems, the never ending cough triggers my gag reflex and I have thrown up because of it. If I start a new medication, sometimes it makes me sick for a day or two. I also get extremely nauseous when...

After my past experience with major episodes of coughing up blood (every 3 months for 4 years, I'd cough up at least a cup), the first time I had an episode where I just coughed up a teaspoon or less had me in a panic attack. However my doctor told me that can happen. Typically, as long as it's...

Do you know if you culture MRSA? When MRSA is flaring up for me, I have a cough like the one you describe.

I was in the exact same place as your daughter. I still have bad days, but the good come more often. If your daughter would like to have someone to talk to, I would gladly talk with her.

I have two dogs right now. During my entire life, I've always lived with at least one dog. We've also had birds (got rid of those after they posed a cf problem), hamsters, guinea pigs, and my father has had a fish tank my entire life. Personally, I could not get through some things without my...

I am no long allowed outside because of risk of infection, although its lung infection not PICC infection. And I agree with you on the insurance view, however, that's insurance's policy, not mine. In their eyes, it's not subjective. If he can leave, he doesn't have to be at the hospital. I used...

To answer your question about doing home IVs: that is different than actually being admitted to the hospital. I often start treatment in hospital and am discharged to do meds at home. I am no longer considered an inpatient when I do meds at home because of that discharge order. If he is an...

The hospital I am admitted to had a B. Cepacia case, so precautions went way up. I used to be able to walk around the hospital with a mask, and avoid touching extremely germy areas, like elevator buttons. After the B. Cepacia, I was only allowed out of my room when escorted by transport...

From speaking with one of my doctors, she believes the better drug combo will be Kalydeco and vx-661, not vx-809. VX-661 is currently in phase two. At the time, I wasn't able to question her more on why she feels this way, but I'm interesting in asking her more next time I see her.

I agree with mamaScarlett as well. If you are not pancreatic sufficient, not taking enzymes is a bad idea. I know that if I forget (which is rare), or even estimate too few enzymes, I am writhing in pain because my stomach is cramping and feels like it's on fire soon after. And in all...

Hi Hannah, I'm Brittany. I'm double df508. I'd love to talk with you. I went through some tough spots beginning when I was about 17. I can PM you email, if you'd like.

My sleep kind of depends on my health. When I am feeling pretty good, pfts are good, I also feel tired if I get more than 8-ish hours of sleep a night. When I'm feeling good, that's all I need, and any more sleep just leaves me foggy. On the other hand, when I'm in the middle of an infection, I...

I got my port last November. I agree with almost all of what Gorf said, except the showering part. It was much easier for me to shower with the PICC. I wrapped a sandwich bag (with the sealed end cut off) around it and taped the edges. It is more difficult to protect my accessed port. Being...

I've had many bronchs. They aren't my favorite things and if there's an alternative idea, I like to try that first. That said, sometimes bronchs are a necessary evil. They can aid in loosening up the mucus and for getting an excellent sample to test. I think, given that this is his third go at...