Recent content by saintoffeon

I think, at least in part, some of this stems from the hurt and desparation some feel. If things aren't swinging your way, and you know you're busting your arse, it may be a human nature thing to pick out a boogeyman. Like others have said or intimated, nobody's perfect and certainly not every...

I'd rather see someone attempt self-made step therapy and have success than forego it entirely and not receive any benefits. Is it the FDA and manufacturer "correct" way? Perhaps not, but if it's correct for you, you're a responsible and informed adult who has had a lifetime of listening to...

I am so legitimately inspired by you scanboyd. Especially with that low of an FEV, how brave and patient you're being. It's exciting stuff!

Good luck scanboyd. I hit my pre-Orkambi weight again, which makes it feel like I'm on the rise overall (like they say about the stock market--viewed at an instant it looks turbulent, but even the ups and downs collectively shift up over time)... plus after grocery shopping on Saturday...

Scanboyd, while the number of vocal people online skews heavier for those the drug doesn't work for (or that they stopped out of concern), there are definitely some home runs. Out of all that I've seen, dozens and dozens, maybe two people got along okay without any real side effects. Everyone...

Not a drop. Not even in the mucus as streaks or anything. This is a whole different planet of existence on this other side. I feel like everything before was kind of sleepwalking. My other non-health problems haven't even changed all that much, and I'm just able to be better at life because...

Day 54... Just chiming in to report I have had my first 98 on pulse ox for the first time in...well, since I can remember. Probably a couple years. Also, finally back to my pre-Orkambi weight. All fifteen pounds are back, and they look better than ever.

Thanks! You know my favorite part? No more freakin' bleeding =P Probably helps that I've worked out enough to build up better lung function...someone told me once that the blood rushes in to keep them from collapsing sometimes if you overwork them, even if you don't have my exploding-artery...

Just wanted to chime in and say, as of Day 46, I am getting even better. Before it was like, whoa, this is so super different from the nightmare crap when I first started, and even a bit better than before I began... I have to keep doing all my treatments for it to persist, but when I'm...

Two years ago and change (May 2013) I was at 45% or so. Then I had one bad thing happen after another, insurance/provider fiascos, and I basically went a year and a half with next to no treament (certainly not optimal). Last year at the beginning of August I went to Mayo Clinic for a transplant...

Didn't you mention before, too, that Orkambi was only marked at 25%? I can't imagine it getting better than this...I'd almost feel like I was going backwards in time =)

First of all, I am fabulously happy you found a solution that works for you. But this particular comment interests me, because the way I feel right now, I'd just die to see an X-ray...it feels like it would be many many shades darker than anything that I've done in a while. I think I mentioned...

I know you weren't being literal and I didn't take it that way. I took it as, boy, sure seems to kick some ass before it makes things better, so I can't wait for the ass kicking so I know I'm on schedule and have something to look forward to!

I just double-checked my posting history, and Day 5 is when I went into the hospital. I'd rather you be disappointed for other reasons rather than hurt or explode or get reamed...so I'll just generally say I hope you get what's best for you, and/or improves your hope/confidence =)

I said I'd dial back my posts unless I had something to report. I plotted out a 5K at my local park and walked it yesterday. 54 minutes! In Sept 2011 I did just under 48, but I also had a ten percent better baseline lung function. Considering that I haven't trained for it specifically, I think...