• Pulmonary Update

    Posted by kevin-schaefer on October 4, 2018 at 3:00 pm

    I had a pulmonologist appointment today, and it’s exciting to see my PFT levels maintained, and improved in some areas. On each test, my scores were either higher or the same as last time. I used to see them drop all the time or remain pretty low. It’s exciting to see these developments and to have my pulmonologist give me a good report. I attribute this in part to Spinraza, and also to doing the vest and cough assist consistently.

    How often do you see a pulmonologist? What’s a good report look like for you? Do you do anything at home to work on improving your PFT levels? For those of you who are on Spinraza, have you seen improvements in your PFT levels since starting the treatment?

    kevin-schaefer replied 5 years, 8 months ago 4 Members · 6 Replies
  • 6 Replies
  • ryan-berhar-2

    October 4, 2018 at 6:06 pm

    Happy to hear that man!  As I have said before, I don’t see a pulmonologist regularly, just a regular doctor. I did see my pulmonologist about seven  Vance, and apparently my breathing is 20% capacity.  That sounds pretty low, but I have nothing to compare it to.

    • kevin-schaefer

      October 8, 2018 at 3:33 pm

      It’s interesting that a lot of people in the SMA community don’t see a specialist regularly. Part of it does depend on where you live and the availability, so I get it. Do what works best for you.

      And thanks! Yeah the results were really encouraging.

  • deann-r

    October 8, 2018 at 11:34 am

    At my last eval, my pft didn’t show any improvements.  Although I feel stronger since Spinraza, the test didn’t really reflect that.  It was fairly consistent though, so that’s a good thing.  Glad yours yielded positive results Kevin.

    I don’t actually have a pulmonologist.  Where I live they’re really not familiar with nmd’s especially not SMA.  My cough assist is vital though.  I don’t have a vest or biPap, so not sure how beneficial those would be for me.

    • kevin-schaefer

      October 8, 2018 at 3:37 pm

      The bipap helps me a lot, especially with sleeping. They also make them a lot better these days. Instead of one that covers most of your face, the ones today have a nose piece that’s a lot less irritating.

      As far as the vest, it does help in conjunction with the cough assist. It’s more time-consuming, but it helps loosen up the secretion in your lungs so that you can cough it up easier.

  • michael-morale

    October 8, 2018 at 11:55 am

    My schedule next week is extremely busy, and one of my appointments is to go see a pulmonologist for the first time. While at the Cure SMA annual conference in June, I went to one of their classes and the topic of finding a pulmonologist was a topic of discussion. Since I’ve never seen one, I thought it would be best to go ahead and make an appointment. The pulmonologist that I’m going to see is located at UT Southwestern Medical Center, the same place that I get my Spinraza injections. One of the things that I’m going to discuss with the pulmonologist is getting a cough assist machine. I’m sure that he will prescribe one for me, and by listening to what you guys have said in the past, a cough assist machine may be exactly what I need to avoid getting another case of pneumonia which I had about a month ago.

    • kevin-schaefer

      October 8, 2018 at 3:38 pm

      Good luck! Let us know how that appointment goes.

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