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This topic has 2 replies, 2 voices, and was last updated 1 month ago by Alyssa Silva.

  • Author
    • #24843
      Kevin Schaefer

      Hey everyone! Hope you all had a great weekend.

      Since my next Spinraza injection is Wednesday, I’m trying to be extra cautious about staying hydrated and eating healthy. I know it’s an obvious thing we should do with or without SMA, but it can be tedious sometimes. When you factor in getting to the bathroom or catheterizing, caregiver availability, and general scheduling, it can be tough to drink enough water daily. For me, I have to make sure someone is available to empty my catheter throughout the day. Also, I try to keep a cup of water within reach when I’m working.

      Do you have any tips or tricks for staying hydrated during the day?

    • #24863
      DeAnn R

      Sorry, don’t have a good solution for you.  At my last Spinraza injection my urine protein levels were elevated so was told to hydrate more.  Pee math doesn’t equate with that though, so I usually opt for being dehydrated.

    • #24865
      Alyssa Silva

      I am my own worst enemy when it comes to hydration lol. But I gotta admit… one time I went for spinraza and was super dehydrated. And it was honestly my most painful procedure yet. I will NEVER make that mistake again.

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