So I had a clinic visit today and it went pretty well. My PFTs are down a bit but I had to work like hell to get up a stubborn plug over the weekend so I've got some pretty bad inflamation going on right now. I'll be doing a prednisone burst for that. I still feel very clear (other than that plug) from the IVs though. So maybe that's a sign that the PTC124 is working. That would be really nice!
I've been having some nausea which, obviously, is really annoying. My symptoms don't seem to fit with slow gastric emptying, when I puke its within an hour of eating usually, not puking up dinner for or five hours later. It doesn't seem to corolate with any particular foods or times of day. They think I may be having some reflux but without a lot of they typical heart burn that goes with it. So I'm going to be trying a perscription reflux med and see how I do.
I'm going to try cayston too, to alternate with colistin. I don't know if I'll be able to get more than a month's worth though because I won't have insurance next month and Medicaid hasn't kicked in. So I might get a month and then have to miss the next cayston month. We'll see how it goes.
And my enzymes aren't being made anymore so I have to try and find something that works. I'll be going to zenpep 5's. We'll see. I hope I don't end up with horrible stomach pains.
1 comment:
Sounds like you have a lot of things a-changing!! Can't wait to check back and hear all of the great updates :)
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