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  • My Experiences with Iron Infusions

    Posted by alyssa-silva on September 26, 2022 at 11:00 am

    Over the summer I had 5 iron infusions. After trying everything to increase my hemoglobin and dangerously low iron levels to no avail, infusions were my last shot. However, things didn’t go so great in the beginning.

    I ended up having a pretty bad reaction to the first infusion which was quite scary. But eventually, things improved. I decided to share my experiences in my latest column to bring awareness to my symptoms and remind others to always advocate for themselves. You can read it here.

    Have you ever had iron infusions? How did the process go for you?

    deann-r replied 1 year, 7 months ago 2 Members · 2 Replies
  • 2 Replies
  • deann-r

    September 29, 2022 at 11:06 am

    I’m sorry you had to go through that. Keeping my iron levels up is a struggle for me as well. Have you heard of Iron Fish? It’s a way to infuse your water with iron. Figured I could try it and use that water with my feeding tube flushes. It probably wouldn’t provide the amount of iron you need though. Was your iron supplement that clogged the tube liquid? If I recall the one I took was. Didn’t have clogging issues but I think nasal tubes are smaller.

    Advocating for yourself is so important. Your story reminded me of a hospital stay where they infused me with potassium because my levels were low. Subsequently my levels got too high so they gave me a medication that basically gave me diarrhea to leach it out. Low and behold my levels got too low. What I realized was every time my levels showed low they had used blood from a finger poke. I voiced my concern about it, had them wait an hour and made them check with a regular blood draw. Surprise surprise my level was fine. I’m glad I spoke up.

    Do you get ANS storms? From what I hear it’s quite common for those of us with SMA. I think I had them before I knew what they were. For me it presented as feeling hot, hard to breathe and increased heart rate. Maybe you had that going on too? Anyway, we are complex beings. Thanks for sharing your story and here’s hoping for continued improvement.

  • deann-r

    October 5, 2022 at 11:57 am

    Curious, now that you’ve been on the iron have you noticed a difference?

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