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    • #17496
      Bailey Vincent
      Keymaster

      I was replying to our dear Jenny here about her recent “in person” CF clinic visit, and it made me realize I hadn’t yet posted about mine! It was last week, so I was only a week and a few days out from neck surgery, but I documented pieces of it here in a little silly video.

      All in all, it went really well (mostly in part to my amazing team). We talked about how worried we are about my weight loss (about 15 pounds in the last few months) and what my ideal would be, and then the contributing factors and how to fix them. Since finances are a big issue at the moment, we dialogued a lot about that (I honestly lose weight a lot when we have to cut corners on groceries, to be honest).

      We did a throat culture since I couldn’t yet cough into a cup or do PFTs so soon after neck surgery, and labs, and other basic things. Almost everything came back grand, except for my red blood cell morphology that was abnormal and had lots of oddly shaped RBCs. I haven’t even emailed my team to check in on that, but my first assumption is: Maybe my liver is to blame? My liver levels go up and down all the time.

      Has anyone ever had this RBC issue before? 

      If you notice something weird on your MyChart, do you follow up or wait for your team to say something?

      I’m always more of a “wait and see” gal (perhaps because I’m also a “bury my head in the sand” gal?), but I never want to make a big deal out of something that isn’t big. Then again, I also find that whenever I ignore something and don’t ask about it… it sometimes rears it’s ugly head down the road?

    • #17505
      Jenny Livingston
      Keymaster

      I’ve never had this specific issue, but generally if I see something abnormal, I give my clinic two or three days to reach out. If they don’t, I’ll email or call them. Sometimes things just fall through the cracks. My team is very attentive and great at communicating, and even still, sometimes it takes me calling attention to something for them to notice,

      If you’re at all worried, I say send that email!

    • #17507
      Tim Blowfield
      Participant

      Nothing about CF surprises me. My wife has had variations in red cell size & shape for as long as I can remember. She also has vasculitis and Sjogren’s syndrome. On ultrasound her blood vessels are ‘small’ and she has had obstructions in the Right Femoral and R Renal Arteries. Blood squeezing through constricted vessels may be expected to cause altered cell shape. The Sjogren’s is almost certainly a reaction to the chronic inflammation of her CF.  Vasculitis? Is it a direct result of the faulty CFTR or of the chronic inflammation? Inflammatory markers are often high in pwCF.

      A question for pwCF taking Trikafta: Are these ‘weird’ symptoms improving.

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