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DS has been on Trikafta for several years and symdeco and orkambi prior to that. He's always had issues with low Vitamin D levels and not only does he take a CF multivitamin, but supplemental vitamin D once a day. Without the supplemental vitamin D, his levels were low. Imagine our surprise...

For those of you in the states who have patient support from Vertex GPS for Trikafta, Orkambi and Symdeco, they are changing around the amounts they'll toward deductibles and copays. I encourage you to contact your rep to make sure you're covered for 2023. They've changed how much they'll pay...

Pharmacy indicated they're unable to get regular albuterol in the brown bottle that we use to mix with Hypertonic Saline. Has anyone else had this issue. They asked about substituting with a premix solution which they are able to get, but not sure how that'd work. Imagine we'll just have to...

Has anyone been prescribed Metformin for issues with blood sugar?

Anyone else having issues getting hypertonic saline? Pharmacy couldn't get our full order last month due to backordering issues.

My teen wcf is going to be a senior next year. He's planning to attend a school in another City albeit a couple hours away... What suggestions do people have with college life? Room arrangements --- single room ? sterilizing nebs? treatments? medication storage?

Wondering if anyone has used a portable nebulizer like a devilbiss or pari trek. DS has a monarch vest and sometimes he likes to wander when using it. He's mostly on hypersal and pulmozyme once a day, so it wouldn't be used all that intensely.

Our teen started having issues with cystic acne, mostly on his nose about a month after starting Trikafta. He had a couple concerning ones that would burst. CF Doctor hadn't heard of acne being a side effect. Made a Derm appointment but getting in was several months out. Meanwhile, tried OTC...

Just a reminder for those in the states to double check that your insurance isn't requiring you to go thru the prior authorization process. A few years ago I got caught off guard when I went to refill ds' Orkambi only to find despite my insurance not changing, we needed to go thru the pa...

https://www.fda.gov/news-events/press-announcements/fda-approves-new-breakthrough-therapy-cystic-fibrosis

DS had a stomach bug last weekend and when this usually happened he'd have very loose stools in the weeks that followed along with decreased appetite and some vomiting. This is the first time it's happens since being on orkambi or now symdeko. He recovered fairly quickly, but complains of dull...

This past weekend, DS' vest has once again started sounding different and been throwing error codes about 5 minutes before treatment time should end. The company replaced it just one year ago. Sigh! New one being sent for delivery tomorrow. Fingers crossed it'll keep working and I won't...

DS has been on Symdeko for about a year and last winter his ALT was elevated. While he was on Orkambi, he had liver function tests every few months the first year, which were normal. Apparently doctors aren't concerned unless it's double the high range and I guess we'd heard/thought Symdeko had...

It's that time of year again... I usually send a brief note to the school nurse or counselor explaining DS has CF, indicating he first and foremost is a normal child who just needs a couple extra things to keep him healthy --- his enzymes, that he may need for water/salt on hotter days...

I'm thinking this has to be an error or a glitch because this is so ridiculous... I figured when I got a bill, it was because our insurance gave us new cards with new numbers. I'd also gotten a statement of benefits indicating the clinic had used the old number. So I called and made sure...

Our teen has been on Symdeko since last August. He'd done well on Orkambi for two years, but wanted to try Symdeko. He's continued growing -- prior to either med we struggled with maintaining weight, barely 50th percentile. He's now probably considered a tad overweight. So no more cream or...

DS' doctor switched him from Atrovent/Albuterol nebs to Hypertonic Saline/Albuterol last Fall and it's not covered under our insurance. So it's $33 every 20 days since he does treatments three times a day. It's just annoying that other, more expensive medications are covered, but not this...

DS' doctor prescribed 7% sodium chloride for inhalation last fall with his albuterol. Previously he'd been on albuterol/atrovent nebs. They eliminated the atrovent. Seems like insurance (BCBS) doesn't cover hypertonic saline -- it's a noncovered, nonformulary prescription and therefore it...

Pulled the trigger on a 50 psi compressor after our Invacare mobilaire started having issues. The new one is so flipping loud. Am going to contact the company, but wondered if this is the nature of the compressor and something we just need to live with. The other issue is I can't keep it on...

DS was denied coverage for the new Monarch vest because he has an existing vest, is doing well and because they won't cover a new vest based on convenience or new technology. Curious how others are able to get theirs covered. I've seen several individuals on social media with Monarch vests who...