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Sunny, welcome to the forum, I'm sorry we aren't meeting under more pleasant circumstances for you. Your son's diagnosis would have been similar to my older brother had I not come along. He was 8 before being diagnosed. He had pneumonia as a kid and had some other minor indicators (gassy...

Like kenna2 said, 28 days on, 28 days off Tobi cycles are common for those of us that culture pseudomonas. I don't tolerate inhaled Tobi super well (hearing diminishes, I fight thrush, I feel like crap), so I use it as a more traditional boost to my immune system, going on it for 28 days when I...

Way cool idea. Thanks for sharing.

I've often wondered if it a simple matter of size. Males are generally just bigger than women. With that size comes slightly larger lungs, slightly larger airways, slightly more body mass to consume when going through illness/weight loss. If I was a researcher I would want to do a data search...

It has been a while since posting and I want to share my experience on Orkambi for the last 15 month (TL;DR version: Orkambi is helping my system when I don't have Orkambi in my system). First some history. August 2015 I got my script for Orkambi, pre-Orkambi PFT was: FEV1=94%...

One day your daughter will be sitting on your lap while doing treatments, you will give her a little salty kiss on the check. She will reach up and wrap her little arms around you and with a great big hug say "I love you mommy." In that moment you will know perfectly that all the pain and...

I use 4 neb cups a day, albuterol then hyper-sal in morning and albuterol then pulmozyme at night. These all fit in a tupperware bowl that I fill with water and microwave each night. Then I have a dedicated colander that hangs across the sink to let them dry. If I'm ill I'll add in a few cups...

Like mentioned, Px coverage, and coverage of an approved center are a major focus (I do have 1 brother whose insurance doesn't cover the CF center, and he's found a work around so that labs, PFTs, and clean-outs are done at an in-network medical center but he still sees the CF center for the...

Totally agree with this^. Sometimes despite our best efforts things will still go south. Not the most comforting thought I know, but sometimes we get so focused on beating the disease that we forget to also live and enjoy life along the way. Second thought, some of your treatment routines seem...

I've always wonder what it would be like to have just 1 kid. Our first are twins. Sleeping enough has always been a struggle for me. My wife is super great at dealing with much of the middle of the night stuff (I'll pitch in more during weekends, when I can catch up on sleep as needed). The...

I'm on 250mg once a day (been on that for 8+ years). I've not noticed any side effects. But if you are worried about side effects, talk to your doctor about side effects and the dosing. Your Dr. might have a some amount of clinical experience that helps support his scripting decisions. Also...

^This a very true. If a potential partner can handle this you've found someone that is extra special. CF will give your relationships an automatic filter that shows their true character. I think a caveat to this, is that it also will reveal something about yourself as you approach...

My wife tells me that she gets 50 years with me. That would put me at 72. I'm okay with that.

Running help me feel better in a lot of ways, but my lung function actually dropped very slightly over the year that I was really training (3 runs a week, plus some other activity) for a half marathon. Also training made me more tired (everything makes me tired). But in the end I think the net...

I've yet to have a hospital stay, but I'll speak of my siblings' experiences for their hospital visit. My oldest brother's first hospitalization was when he was a freshman in High School. In the 25 year since that first visit I believe he had only been re-hospitalized 2-3 times. His visits...

6 meals a day and get checked for diabetes. Or if already dx as diabetic, work with your clinics' dietitian for several sessions until you can figure out how to down the requisite calories while controlling your blood sugar. How many calories do you eat in an average day? If you don't know...

My doctor mentioned the affect of Orkambi on acid reflux meds but didn't mention any affect to enzymes but high acid can cause decrease enzyme effectiveness so I could see how they might be linked. I'm not on acid reducers, and maybe that is why the Orkambi hasn't had any real significant...

Good advice on record keeping. I've got a deeper history of my PFTs than my clinic does. I bring a chart with PFT data dating back to 2000 where my clinic is only looking back to 2008. All my records have been with the same clinic but when the clinic went digital the older PFT numbers got...

I'd call two months ago an 'average' state of health for me or maybe I could call it stable state of health. The week before I started I had a head cold (not bad enough to start antibiotics but getting close), then the first few days of Orkambi my cough was a little worse (but it was hard to...

All the packaging and the sales/support calls from Vertex drive me nuts from a 'at least make some attempt to cut the cost' point of view. Also the 28 day script makes me roll my eyes, only $$,$$$ with 7% fewer doses than you need for a proper month. That means I get to pay 13 co-pays a year...