more remodulin

I had an appointment with my pulmonologist up at UCSF on Monday, and he convinced me to try increasing my dose of Remodulin one more time and to have another right heart cath done — they’ll put a catheter in my heart and look around and measure the pressures in there. (I’ve had this done many times and it sounds worse than it is.) He thinks there’s a tiny TINY chance that, with a little more Remodulin in my system, they *might* be able to fix the hole in my heart, which *might* lessen my symptoms somewhat and give me a little more time. Don’t get all excited, it’s a very very very slim chance.

So I cranked my pump up one notch yesterday (to 0.04 mL/hour, which equates to 32 ng/kg/min at my weight) and now I’m waiting for the hideous side effects to set in… I will probably have several weeks of near-constant migraines, full body pain, and intense nausea. If I can’t handle it, I’ll need to drop back to my regular dose. We’ll see. I couldn’t handle it last time we tried this. Anyway if you don’t hear from me here for a while it means I’m lying in a dark room trying not to puke.

In other news, I finished my beautiful Voysey print “Modern T” quilt! and it’s the most beautiful thing I’ve ever seen and it is mine, mine, mine. I drew leaves and vines all over the backing and quilted from the back, which was really fun! I used a different kind of wool batting (Quilters Dream) and I think it is MUCH better than the stuff I got from JoAnn’s. Barely any fibers on the surface of the quilt after washing. I wish I’d used this better batting for Henry’s quilt, but oh well, live and learn. I also finished Suzanne’s little green lap quilt and she loves it :) :) :)

Next up: quilts for Emma Rose, Chloe, Kathy, and Lulu. I think I have enough fabric for all of them, except for the backings. I’m waiting for muslins to go on sale at JoAnn’s…

Category: Blog, Handmade 5 comments »

5 Responses to “more remodulin”

  1. jennifer

    stunning quilting ! thank you for the up close looks with the details

  2. Mike Wilson

    Sigh. This sounds miserable… sorry, sorry.

  3. Lea

    As someone who has admired your creative output for years, thank you too for sharing your health updates with such honesty.

    You are in the thoughts of many, many people who you’ve inspired.

    And the new quilt is perfection :-)

  4. Suzan

    Thank you thank you for everything that you generously share! You have fans here you don’t even know, but we are all rooting for you with love 🥰

  5. Catharine

    Your quilts are GORGEOUS!

    Are you hand-quilting everything or do you do free-motion? If the latter, you obviously have LOTS of practice.

    Hope the increased remodulin helps!


Leave a Reply



Back to top