Day four was kind of impressive. Nothing ancient or hairy or gross came out, but I easily did a month's worth of productive coughing in the past few days, bolstered by my seemingly unending stream of sputum spitting I was engaged in. Big session in the morning, big session in the afternoon (also very weak..once I got home I crashed and slept for three hours... I was COOKED) and decent session tonight.
It sounds weird to say but I am kind of excited because it's just a few days in and I see more change...it's not pleasant-feeling in the moment, but in my mind I'm fast-forwarding to, say, seven days, and wondering about what other bigger scarier gross things might leave me. Let's clear the table! =)
Also, this is the first day I was involved in any non-walking exercise. After my nuclear-level weakness and sleeping through dinnertime, I had enough energy to do some light cardio. Timing-wise I needed to do my vest to be able to take my drug on time, so I cut out early (also, they moved to doing a lot of on your back stuff, and I have trouble breathing and not coughing like that)...but what I got done was more than I thought I could do and hopefully helpful to the cause. Probably a solid 12 minutes of legitimately moving around and working things out.
I have been seeing a lot of bitter/jaded comments about the drug on social media. It's absolutely okay to react that way; in many ways it seems less and less like even the compromised version of what we thought it would be. Just remember not to dwell on that and live in that place for so long it becomes unhealthy.
We've all spent our whole lives fighting things and being bent over, so we're tough enough to live through a false positive with our character intact. We also don't need any extra stress that might cause other health problems.
Aside from trials, though, the most anyone's been on it should only be about two and a half months, and the trial results, while modest, took place over 24 weeks. I really believe patience will be rewarded. I think it's doing its job for everyone, in terms of mechanism of action, I just think there's SO much going on with each individual case that there's no way to tell how it'll play out.
Sometimes when I'm in the hospital they give me MucoMist and I say I don't want to because it dries me out, and they say, "No way, the book says that's impossible," and then they ask me to cough up something to be cultured. I can't, it's all dry in there now. It may be similar to that, where with the fifty thousand meds we have to take, the playing field is changing so much that ever-so-slightly-thinning-mucus has more of an uphill battle to produce any obvious effects.
For what it's worth, I am not backing this medicine or defending it, and I will be the first to support anyone upset by it. I'm literally throwing ideas out, and nothing I'm saying is intended to be professed as opinion. Just openly discussing theories =)
I could be taking this forever and not get any better and my views will remain the same. For as expensive as it is, you'd hope there was a better chance that it would override every other thing wrong with you to be clearly doing its job in an overt fashion, with a much more increased likelihood of overall success, but we also can't get caught up in that, this time, that may not be the case.
That's why I am trying to focus so much on what I can do with what energy I have. I think it not just benefits from the help, but may need it. It's like when you see those diet pills, and people say, "Oh, I just took it and in twenty weeks I lost 140 lbs." So you look up the drug and there's a note that says "Take one a day, and then diet and exercise." Hmm...maybe you can take anything and diet and exercise and it'll help. Maybe that's the first time they dieted and exercised, and that has more to do with it than anything. Credit doesn't go where it's due, but hey, whatever works if the end result actually happens.
Cheers to you guys for staying strong. I hope we all come out as well as possible through this.
EDIT: Almost forgot. I don't know if it's an aberration, so I was waiting a few days to see if it was the case, but I'm a lot more regular, consistently, in these past few days. None of that classic paint-stripping CF grease that can sometimes accompany our bowel movements. Also very easy to pass with little strain, and up until day it wasn't too soft or watery at all. Having just had a bout of fecal impaction prior to starting, since I stay hydrated enough, I'll take that over the alternative any day. I have always been more successful without pancreatic enzymes though (a secondary reason, aside from trying to prove eligibility to get into clinical trials for this medicine, that we went through with a blood test/genotyping to confirm the baby diagnosis, based primarily on "failure to thrive" and sweat chloride off the charts)...so I'm not sure how that will play out for the tons of other people who need them to live.
And the super-hydrating effect that the Orkambi seems to have on my lungs and sinuses I can replicate w/o drugs via vagal nerve hyperstimulation. But it only lasts about 10 minutes, thank heaven. Its enough to really help though. THat's how I've lasted so long without out being able to do regular nebulizers.