Viewing 10 reply threads
  • Author
    • #23613
      Alyssa Silva

      Last week, I left my house for the first time to go to the hospital to get Spinraza. It was long overdue, and the extreme weakness I’ve been feeling has let me know it.

      Anyway, because it was the first time leaving my house, it was also the first time I’ve worn a face mask.

      Long story short, I couldn’t breathe with it on and nearly fainted by the time I got up to day surgery. I was rushed into a room without checking in. My O2 was 89, heart rate in the 140’s, had nausea, tremors, lightheadedness… and so on.

      Is anyone here unable to wear a mask for the same reasons? I don’t know if it’s because my body is so weak right now or if this is always going to be a problem. I tried wearing one on my way out that day, and it happened again.

      Needless to say, I’m at a loss on what to do in the future. I wasn’t planning on throwing myself into crowded spaces anytime soon, but I was hoping to do some things outdoors this summer (beaches, parks, etc.) while practicing social distancing and wearing a mask.

      And, right now, it’s kind of bumming me out.

    • #23618
      Rachel Markley

      I also feel the same and it’s stressing me out because I work in a hospital and need to go back in soon! I have no solutions though 🙁

    • #23619
      DeAnn R

      I feel you.  Had to wear a mask all day for my Spinraza injection.  It was miserable.  The only thing I can think of is a more breathable fabric but that kind of defeats the purpose.

    • #23624
      Chelsea Chandanais

      In addition to SMA, I have severe asthma and I can’t handle a mask either. I had to wear one once before all this started when I was at the doctor for a particularly bad case of bronchitis several years ago. It was way too hard to breathe, but I thought maybe it was just because I was sick and my asthma was flaring more. So, I ordered a mask and put it on before I left my apartment to go to cancer and infusion center for my monthly infusion of asthma medication. I had to take it off before I even got out the door because it was too hard to breathe. When I got to the infusion center, I was told that EVERYONE was required to wear a mask in the waiting room no matter what, so one of the receptionists tied one on me so loosely that it barely stayed on my face. When the nurse took me back and took my vitals, my blood pressure was 180s/109, heart rate was ~155 (not too much higher than my normal of 120s-130s), and my O2 was down to 92%. My O2 almost never goes below 98% and I’ve been in the ICU during severe asthma exacerbation and threatened with intubation with my O2 at 100%, so the O2 was the most concerning to me. After I took the mask off, she took my vitals again using a different blood pressure cuff and my blood pressure went down although it was still a little high, my heart rate went down to 140, and my O2 came back up to 96% almost immediately. I am really hoping I don’t have to wear one when I go back next week. I didn’t wear a mask when I went to my appointment with my allergist last week and although there were signs all over saying that they were required and I was the only one without one, no one asked me to put one on…probably because I have scared just about every single staff member there with a severe asthma exacerbation several times, including their brand new PA the very first time I saw her last year.

    • #23628
      Alyssa Silva

      Ugh, it really stinks that we’re high risk and can’t protect ourselves. I know this isn’t a solution, but if and when I venture out again I’m thinking of wearing glasses. It isn’t much, but at least the mucus membranes in my eyes will be somewhat protected. If anything, it’ll give me an ounce of peace of mind knowing I’m doing SOMETHING to protect myself. I don’t need glasses but I do have blue light ones for the computer that I use.

    • #23630
      Halsey Blocher

      What type of mask was it? Some are easier to breathe through than others. I just bought a reusable one, but haven’t worn it yet. The fabric is really light so I’m hoping I won’t have problems with it.

    • #23632
      Alyssa Silva

      I tried one of those paper-like masks haha I don’t know what they’re called! But they’re the generic ones nurses and doctors wear in the operating room. I also tried a homemade cloth mask that didn’t work either.

    • #23656
      Halsey Blocher

      I think those are just called surgical masks. I’m not sure if they make anything thinner than that.

    • #23670
      Chantell Venter

      Maybe you should try a face shield instead of the mask and see how it goes.

    • #23680
      Dennis Turner

      A clear face shield and a single layer of bandana might work for you. I wear a reusable cloth mask made by a friend from church, but it is very restricting compared to the surgical masks i have from the hospital.
      Glad to hear you finally got your Spinraza, Alyssa. Praying you get your bounce back.

    • #23691
      Alyssa Silva

      Chantell and Dennis, this is what I’m thinking too. I’ll have to fashion something and try it out. I will keep you all posted. Thanks for the advice. It is much appreciated.

Viewing 10 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account

Verify you are not a robot