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End of June already?

June 28th, 2016 — 12:38pm

Wow. Time flies.

Things are pretty good. I increased my Uptravi to 1200mcg about three weeks ago and didn’t have the avalanche of side effects that I was expecting. I had two or three very bad days of full-body aches and exhaustion, and lots of small headaches and episodes of facial flushing, and my knees and feet hurt most days. But no killer make-you-cry headaches, thank goodness, and not the “4-times-a-day painfully burning hot face for a full hour” flushing that I experienced with the last increase. It was just generally easier this time than the hop from 800 to 1000.

I have my arsenal of weapons against the side effects, which I will list for the benefit of other Uptravi patients who might find their way here: ice packs for my hot face, imodium and simethicone for the tummy troubles (two imodium a day, in the evening because they make me sleepy, and simethicone whenever my stomach starts to feel “wrong”), ondansetron for nausea (I bought some “Chimes” ginger/mango chews from Trader Joe’s that are quiet effective against light nausea, too), aspercreme for the muscle and joint pain (works well for muscle pain, less so for joint but better than nothing), flonase for nasal congestion.

I think I have finally noticed a slight, very slight, improvement in my pulmonary function. For most of 2016, since stopping the Tyvaso, I’ve needed to use oxygen almost the entire day. Even at rest in the afternoon I’ve needed 3 liters of o2 just to stay at 93%. Not good. But for the past, oh, three weeks or so I’ve noticed myself forgetting to turn on my oxygen machine until the evening, and sometimes I check in the afternoon and find that I’m at 93% even without breathing extra oxygen.

Walking from room to room still makes me lose my breath, or even bending down to pick something up off of the floor, but being able to breathe a little better while sitting still is very nice anyway! Next Monday I’ll go up to 1400mcg, and then a month after that to 1600mcg, and that’s the top dose.

My mood has been good, I’m sleeping and eating well, and my life is comfortable living here with my lovely family. I’ve been working on Dracula when I can and am halfway through the book! I started a new knitting project recently, am reading a good book, and have discovered a new podcast. I’ll write about all that in my next post.

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