The reason for this change is my awesome, amazing, and basically unbelievable doctor. She and I decided at my appointment today (5 weeks down!) that I should switch back to Merrem for the final week. Apparently my recent cultures showed some insensitivity to Aztreonam, which probably explains why I haven't been feeling 100% for the past few weeks. I have to say, it's kind of a relief to learn that my cultures just aren't sensitive to the abx combo I've been using, because while that certainly sucks, it's a whole lot better than having PA so strong I can manage to get flare-ups even while on the correct drugs. And it also means that there's a good chance I'll feel a lot better by the time they pull my access next week, which is exciting. I was doing great on the Merrem during the first few weeks of this IV course, so I have high hopes.
My doctor and I did talk about transplant. My FEV1 this time around was 35%, which is about where I typically stand when I'm healthy, but not yet up to baseline. My baseline is more like low 40s. So there's still room for improvement, of course, but things weren't too bad. I think both she and I were a little disappointed that this is where I stand after 5 weeks of IVs (even considering the Aztreonam wasn't doing the full trick, between that AND the Tobra IV I still should have had a little more improvement I think), but there's not a whole lot we aren't trying at this point. She noted that they don't really take into account infection frequency in calculating lung allocation scores. I told her I was still interested in delaying transplant as long as possible. I think the mark of a really good doctor is that even with things not being where we would both like them, still left the appt feeling SO MUCH better, and with sort of a renewed commitment to fighting this thing for as long as I possibly can. She's not giving up on me right now, and she doesn't think I'm ready to be listed, and frankly that's good enough for me. I can still do a lot of what I want to do, and while I am really worried about what's going to come of work, for right now I'm going to keep trying to be a lawyer and a CF patient. So watch out crappy CF lungs, because I'm waaaay over this little comedy of errors we've been acting in together for the past few months. And this time it's personal.
But for tonight, Sammy and I had some fun in the dog run, I had a great St. Patrick's Day dinner with good wine and a good friend, and now me and the boy are watching a very funny re-run of The Office . . . without the gravity drip!
Wishing you all a very happy St. Patrick's Day!
May the road rise up to meet you,
May the wind be at your back,
May good friends be there to greet you
And your table never lack.
May your life be filled with laughter,
and your heart be filled with song.
May God shine His light upon you,
As you live your whole life long.