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February 23rd, 2018 — 11:03am

I’ve got bronchitis. Feeling dreadful. Been stuck in bed for almost a week. Cough cough cough.

I still haven’t found a reasonable solution to my sub-q remodulin adhesive allergy issues. It’s really strange. I’ve tried every adhesive known to man, and even if they don’t cause a reaction when tested on my arm, I still get a rash when I use them to anchor a remodulin infusion site. My hypothesis is that something about having the remodulin pumped into my body makes the skin around that area super-sensitive to adhesives.

I have managed to avoid a full-body breakout by changing sites and swapping thighs every three days, and using an even higher-powered steroid ointment, fluocinonide, on the “old” site. Not fun.


I went to UCSF for my quarterly pulmonology appointment on the 13th and they said that since I can’t get sub-q delivery to work I need to switch to IV remodulin, which is really scary. I very much don’t want a Hickman catheter hanging out of my chest so my doc suggested we try a PICC line in my arm instead, just to make sure IV remodulin works for me and get me used to the whole IV situation. He says a PICC line isn’t a good long-term solution because it needs to be changed every couple months, but there’s a brand-new treatment option under review by the FDA right now — a surgically implanted remodulin pump, refilled by syringe every three months — that MIGHT be ready to go by the end of summer. So it’s possible that I could use a PICC line to stay alive until the new implantable pump is ready to go. Maybe. Fingers crossed.

Meanwhile, bronchitis sucks. I saw my doc on Tuesday to be sure it wasn’t flu or something bacterial. He gave me an albuterol inhaler to help me breathe and said I should start feeling better in a week or so. Still waiting.

UCSF wanted to implant my PICC line next week but that’s on hold until I get over the bronchitis.

Hurry up, FDA.

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