Mastodon bronchitis —


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.

Category: Blog 10 comments »

10 Responses to “bronchitis”

  1. Suzan

    Oh yes, hurry hurry FDA and please, crazy orange orangutan, make sure health services receive funding. Kara’s granddaughter wants to PLAY with grandma!

  2. Vivian

    Oh Kara. Praying you’ll find a solution that’ll work for you, that you’ll get relief from your bronchitis and allergy, and that you’ll find joy and hope. You are such a part of our daily life — my son’s day isn’t complete if he doesn’t get to listen to you.With love from Australia =)

  3. Amy

    I’m sorry you’re having such a hard time of this. I hope the FDA comes through for you. xxx

  4. Brenda H

    I’ve been listening to your recording of The Secret Harden and am sending blessings to you

  5. Brenda H

    I’ve been listening to your recording of The Secret Garden and am sending blessings to you

  6. Audrey

    You may enjoy A Stitch in Time on Youtube. Season 1, episode 2 features the painting The Arnolfini Wedding. Excellent show about recreating historical clothing using methods and materials available at the time of the featured piece.

  7. kara

    Yes! I’ve been watching A Stitch in Time. Great show. :)

  8. Zak

    Perhaps collodion-based adhesives might be useful for fixing the infusion set (however, they are also known to have caused allergy in some patients).
    I’m now listening to “This country of ours” by Marshall and narrated by You. Thank You so much and get well soon!

  9. kara

    Thanks, Zak. I’m severely allergic to colloidion adhesives. Glad you’re enjoying This Country of Ours :)

  10. Chrisentiae Saint-Piaf

    Sending you love, positive energy Kara to get well. xo

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