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I was diagnosed at 34 and I think it took 4 to 5 months for them to figure out what was wrong with me. I remember having medicine and lung clearance to start doing daily. I believe catching pseudomonas is why my case was brought to light. The antibiotics you take are determined based on the...

My doctor has discussed with me that some antibiotics cause hearing issues that go away when you go off them while others cause permanent hearing loss. My recollection is that TOBI and Azythromicin fall in the temporary hearing loss category. Amakacin can cause permanent damage, which happened...

I was primarily working from home until I went on disability last year. I work for a consulting firm as part of a global team where a lot of our work was in small teams or by conference calls. It can be lonely at times. I think a lot of companies would want you to work in an office setting and...

My sinuses definitely get congested - particularly when I'm doing my lung clearance and when I go out in the cold. I use a salt water rinse using an ear syringe every morning, which really helps clear things out. I also use a nasal spray at bedtime. I still have congestion but try to blow my...

I've had PICC lines placed for home treatments. They've always numbed my arm but not put me out. In my case, it's generally done by an x-ray technician in the x-ray department and takes 45 minutes or so. I had one bad experience with a resident who didn't know what he was doing. I was told...

The Canadian Cystic Fibrosis Foundation profiled a police officer with CF a few years ago. See page 6 of the newsletter: http://www.cysticfibrosis.ca/assets/files/pdf/Candid_Facts_Winter_2010E.pdf

My experience is the same as most above -- peak and trough should not be drawn from the PICC line. I was on Amikacin and they would not use the PICC line for those tests. For me, drawing blood through my PICC line had led to it blocking. As a result, they never draw blood from my line anymore.

That's my gene as well. Thanks for the link to the FB group -- I've joined.

I don't think this is a stupid question at all. In fact, I don't think it's always easy to tell what's causing your symptoms. For example, whenever I get a cold, my lungs end up filled with mucous that takes weeks to work out. After the cold is over, I would not consider myself sick, but it will...

I'm on a lot of antibiotics including cipro and I've gotten my flu shot. I agree you should check with your CF doctor to confirm, but I don't think the meds alone are enough to skip the flu shot.

If I remember correctly, Pulmozyme in Canada is about CAN$1,100 for a four-week supply. Very expensive compared to hypertonic saline, which is about CAN$14 for the same period.

semperfiohana -- yes, that's what they look like. I'm pretty sure they're the same. I haven't actually used one yet. I'm usually not too bad with itching.

I tried Pulmozyme but it didn't work for me. Every time I used it, I would cough up blood the next day. I find hypertonic saline works better for me. Based on what I've seen on here, I think I'm in the minority. One of my doctors mentioned the use of Pulmozyme vs. hypertonic saline seems to...

Similar to the comments above, I was diagnosed at 34. I am pancreatic sufficient. I would say I'm not over or under weight, although this varies by person. You could have CF. Hopefully the genetic test can definitively give you an answer. Good luck!

The hospital where I get my PICC lines has stopped using stat locks. They use a different type of adhesive cover that keeps the PICC in place. This isn't yet being used by home care, so I haven't actually had a chance to see how well it works.

I tried the acapella choice last year because it was recommended by one of the clinic staff. I found that as I used it, it would build up saliva inside the device and then it would no longer vibrate. I gave up and switched back to my flutter that I had been using for 10 years. The flutter is a...

I have been on MAC treatment for about 20 months now, but they have had to change my drugs a few times due to side effects. My worst experience was with Tygecil. I was only on it for about three months. Initially, it caused nausea which made it difficult to eat. Over a longer period, it caused...

My CF doesn't show up with a sweat test. I was diagnosed -- by genetic testing -- at the age of 34. I was having a lot of lung infections and heavy sputum. I am pancreatic sufficient. I don't need to take enzymes and I have no problem keeping weight on. I don't remember the exact number, but a...

In terms of heat pads, I find the moist heat pads work much better than any of the others. I also brace the part of my body that hurts when I cough. It reduces the pain, and I think it helps with healing. I also find massage therapy a great help. Finally, I did crack some ribs earlier this...

I was having some similar problems last fall. I was having problems with stool build-up in my digestive system as described in the reply above. I also was having pain caused by the medications I was on. I now take a daily laxative (Restoralax) to avoid a recurrence of this problem. I still have...