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I should add that the Orkambi was clearly working. I coughed a ton of sh*t up. Despite the rxn, I'm pretty excited about it.

Started Orkambi last night. Had what I would describe as a pretty bad reaction. Severe bronchospasms and asthmatic rxn, violent coughing, pulse 95+, resp 25-30/min, O2 sats barely maintaining on 3L oxygen with frequent dips to 84%. Severe rhinitis, fever, intense, and I mean INTENSE...

My clinic (UNC chapel hill) has been VERY on top of things. Had an appt in late July, they immediately put in the paperwork (I already had DNA typing and liver tests on file), and Vertex called me within the week to verify all info. They handled the insurance company for us, who is doing...

Yes, it can be very helpful. See one off and on my whole life. Sometimes I'll go a decade w/o, then hit a rougher stretch and see one for a few months. Whatever works for you! But you have to find a GOOD one. Talk to friends, family, etc. Word gets round. If they dont have a bit of a...

Caitlin, if you dont mind me asking, what's your FEV1 at this point, after waiting so long? What was it when you were listed?

You have the added bonus of most likely shortening the life, via passed infections, of someone you love. Doesnt get much more fun that that. :(

I love pickles or anything salty. Soy sauce is good on anything and tuna fish is best when crunchy with salt crystals :) OK, I'm hungry now.....

Doing IV, without first trying oral antibiotics, for something as simple as HI, seems like major overkill.

anything with fat, legumes. Chickpeas are especially deadly!

I would switch clinics. You need to trust that these people are batting for your son, will take your concerns seriously, and take the time to explain things to you clearly. If he has one df508 and another that is considered varying consequence, I would think they would take any GI or...

I am ddf508, born in 1971, Apgars of 10. I immediately went downhill after birth. By the time I was 3 months old, I'd had 3 cases of bronchitis or pneumonia had LOST 2 lbs from my birthweight of 6.5 lbs, been hospitalized almost constantly. They finally diagnosed me with CF. To give you and...

I have noticed a difference with MTX, less inflammation overall. Havent had a problem with increased infection rates, but prior to the MTX, my immune cell counts were way high and the drug just brought them back into the normal range. I am very careful though, always washing my hands and...

I've been on methyltrexate for 9 months and I've handled it pretty well. Makes me tired though. I have to get blood work done every couple of weeks too.

Wonderful. Thank you. I saw a lot of myself in what you wrote.

This is not the first time I've heard of someone with CF who had no issues until mid adult-hood, then something triggered the disease. It's gotta be a bit of a shock. But now that things have "kicked" into gear, I would highly suggest following the CF clinic regimine if you want to stay...

That is pretty darn frightening..... Especially since new parents dont necessarily know any better. You'd think a clinic would try and set an example.

Hon, if you dont see people taking adequate precautions to prevent your child becoming infected, I would switch clinics faster than lightening. AND report the clinic to the CFF. Your baby ought to have been masked and she shouldnt touch ANYTHING, like a waiting room chair, door handle, etc...

Jenrenea, Just out of curiosity, is everyone (CFers) masked at your clinic in the waiting room and walking around the halls?

Yes, Gammaw, thats what I think too. Its hard to go from being able to run a 10K, swim a mile, then bike 10 miles (all back to back), to being excited about walking a mile. Huge change in less than 2 years.

Gammaw, thats really interesting. It correlates to what I have noticed over the past few decades with an FEV between 50% and 70%. Really intense exercise made my asthma and oxygen sats worse, light doesnt help much at all, and moderate really helps a lot. Unfortunately all I can do is what...