• Not on My Radar

    Posted by deann-r on February 18, 2022 at 9:15 am

    So glad to have you back posting again Alyssa. I hope you continue recovery and feel better every day. Sending hugs and healing vibes!

    Her recent post has me thinking about my time in the hospital. It’s been a while, but feels like just yesterday. It started in the typical fashion. A cold turned into a cough I couldn’t shake that led to pneumonia. While in the hospital they deduced my swallow, or lack thereof, was contributing to my stubborn pneumonia. The solution? A feeding tube. Despite my reluctance I did it. Do I love it? No. Did it save my life? Debatable, but I’m still here so…maybe?

    At the time I thought I had SMA figured out. I knew about losing arm strength and breathing issues. Needing Cough Assist, Bi-Pap and someday a trach were all known possibilities down the road. Swallowing issues however, weren’t on my radar. A nurse walked in while I was in tears processing everything and tried reassuring me it was probably temporary. She didn’t know SMA like I do. Nevertheless in true SMA fashion I sucked it up and 7 years and 4 failed swallow studies later I still sport the Mic-Key. My neurologist actually suggested another swallow study, but I’m over it, so declined.

    Is there anything about SMA that has taken you by surprise? How did you deal with it? I share my stories in hopes the same news won’t catch the next person by such surprise. Not that it will happen, especially with the changing landscape of SMA, but at least know it’s in the realm of possibilities.

    deann-r replied 2 years ago 2 Members · 2 Replies
  • 2 Replies
  • alyssa-silva

    February 18, 2022 at 9:30 am

    ironically, I’m about to go for my first swallow study in about 15+ years today, and I’m 99.9% sure I’m going to fail. This post is eerily similar to what I’ve been going through in the hospital, but I think there were other contributing factors that are unrelated to SMA that caused me to have difficulty swallowing. To make matters more challenging, I have an NJ tube which is not going to help me pass this test. Ugh, I’m stressing!

    • deann-r

      February 18, 2022 at 5:12 pm

      Try not to stress too much. I’m sure whatever the results you’ll handle it with grace. It stinks though. In these situations all the feelings are justified.

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