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Gotta let kids be kids. Heck, I grew up swimming in a sink hole for years. 5km also isn't that long, that's about an hour's walk. Maybe a little longer to compensate for a group and stops. Then again, I'm not a parent. I'm only responsible for myself. Best bet, I'd think, is that the kid...

Probably a dumb question, but are you properly hydrated? I know I get a lot of soreness and feel generally sluggish if I'm not.

Just start with what you can actually do. Don't push yourself. Walks are great. Heck, just walk around the mall or something. Even if you gotta stop and catch your breath, moving is better than not moving. Also, look into pulmonary rehabilitation programs in your area. They can set up some...

Worst I've had is some throat irritation. Might end a treatment early if it bothers me. Usually goes away pretty quickly, though.

I doubt it's helpful at all as I'm not on kalydeco or anything, but whenever I start getting those low-grade fevers off and on (like 99-100 every night or so but completely normal during the day,) usually means it's about time for IV antibiotics even if I'm not outright sick. Are you on any...

Honestly, I just went past the due date and let the state choose. It went with Prestige. I got the brochure with the differences between the two, but neither really meant much when I didn't know what I was already getting with Medipass. As long as the important things (scripts, hospital...

I remember someone linking a website in a similar thread at some point that hired disabled folk to do phone work, customer service stuff, from home. I think it was NTI@Home. I don't have any experience with them personally, but it might be something to look into.

I would say jogging could replace physiotherapy (vest, cpt, acapella, whatever) but the treatment still is medicine to open the airways and thin mucus so it's easier to clear. Skipping that morning one means he's going without said meds until after school, so I would think that's not the best...

After I turned 21, I was without a CF specialist for a while. Despite living in Tallahassee, a capital city, there's no certified CF doctor or clinic within 200 miles of here. I was seeing a regular pulmonologist for a while, but when I actually needed a hospitalization he told me "let's wait...

Personally, I've just had too many bleeding issues related to ibuprofen and the like. Even when just taking it to keep a headache or fever down, I'm pretty wary of taking more than a few over a short period.

Assuming I don't have to be up for any reason the following day, then about 8.5-9 hours. Though there are those days where I force myself out of bed around that 9ish hour mark just because it's getting to be late in the day. There are also times when I could take a nap in the middle of the day...

I'm going through this myself, my Vios is on its way out. As someone else said, though, I just get it replaced under the warranty every time. Call one day, new machine's here the next, they send a label to send the old one back for no cost. Good luck finding something more hearty. I know I...

Are you on any every-other-month outpatient antibiotics like cayston or tobi? I had a similar experience with my last hospitalization where it felt like I was better after getting out, but like I still wasn't over what I had. Wasn't breathing too well, still ran some temperatures at night...

I'm not an expert on children, but I do know that if he's getting down into the 70s for o2 sats, exercise is going to be rough. Not to say keeping active wouldn't help because it probably would, but don't push the little guy too hard. Give it time for the antibiotics to do their thing and keep...

When I did pulmonary rehab, I'd always finish with a quick vest session. Always seemed to help up some of the stuff that got knocked loose.

A pulmonologist would be the doctor to see, yes. Also, carriers are typically asymptomatic. I'm the only one in my family with CF with two siblings who are perfectly healthy. A lot of us are the winners of the genetic lottery, so to speak.

That was actually to qualify in the first place, and yeah, I qualified. Then again at the time I was at around 50ish% FEV1, so numerically speaking I was disabled even if I was a lot more active than I am now. If you're actually having problems, it shouldn't be hard for a medical professional...

I had to do something like this for my SSI disability a number of years back. It was really basic, just a regular physical with a PFT. They asked about my therapy routines and medications and whatnot, if it were done today I wouldn't be surprised if they wanted a six minute walk. Might be a...

That all sounds very strange and I'd talk to your doctor about it. I will say a few things, though. One, if you're running fevers, yeah you probably have some sort of infection and definitely bring that up with your doctor. Also, do you have blood sugar problems? High blood sugar can lead to...

My last PFT was 21%. Really, I bounce between 20-25% pretty regularly and have for a couple of years. My lowest was 18% during an illness last year. I desat while walking for a few minutes, but I still get around pretty well without. I take the bus, do my own shopping and whatnot without...