I know we all have days where we can't do what we should do. Maybe it's lack of personal motivation that makes us skip working out or clean the house. Maybe it's fear of side effects that makes us skip medication, or that we're just so tired of being sick and skipping a Vest treatment makes us feel like a normal person for a moment. I admit I've fallen prey to those traps now and then.
My friends and doctors know me as a compliant patient. Sure, I'm not perfect. Treatments do get missed because I get busy, mainly. As a matter of fact, I just realized this morning that it's May already! I'd completely forgotten to switch to Cayston (which I'll do tonight - gotta get out the stool to get down the Altera from the top shelf) and to start new insulin pens. So, in this case, my non-compliance to the usual orders was just due to plain old forgetfulness.
But some non-compliance can't be blamed on forgetfulness or a busy schedule or just needing "a day off". Some of it is directly attributable to fear. I talked to a woman briefly after the last transplant meeting who said her 16-yo w/ CF has been evaluated for transplant, but is not coming to the patient meetings. He says he feels like he doesn't need to, yet. I kind of get that, being myself one of the patients all the other patients look at and think "you're not on oxygen, you don't need a transplant". There's a pressure there as someone who's not in the O2-carrying crowd. But this kid is just acting out on his fear. The fact is that he WILL need a transplant someday and if he's already been referred and evaluated, then that day is within the next couple/few years. And he needs to attend those meetings now, or they won't list him.
How do I know that? How can I be sure that a patient who is non-compliant regarding attending educational meetings won't be listed? Because one of the women I've seen at two of the meetings now was denied for that very reason! She got sicker and sicker, the doctors met and then told her that while she does indeed need to be put on the list, they can't do it because her non-attendance is evidence of her non-compliance. If she won't listen to doctor's orders about something as simple as going to some seminars, what else won't she listen to? So now she's attending the meetings. I'd say "good for her", but really....how can someone be so stupid in the first place?
Dr Lederer touched on non-compliance very briefly and I asked him how many patients become non-compliant after transplant. (After all, being transplanted is a whole new condition to manage.) My thought was that some patients will fall into the trap of "I feel so great now, why am I taking all these pills? Maybe I can skip this doctor appointment?" etc. He said perhaps 5%. To me, that number is shockingly high, but perhaps that really represents a 95% compliance rate, which in the medical community is also shockingly high. Lederer blamed post-tx non-compliance as one of the reasons for post-tx rejection complications.
I guess my question is: why don't post-tx patients stay compliant 100% of the time? Why do some fall off the wagon? Is it for the same reasons we fall off the wagon before transplant? Or a different slew of reasons altogether?