This topic contains 8 replies, has 4 voices, and was last updated by  Kevin Schaefer 2 months, 2 weeks ago.

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  • #17476
     Kevin Schaefer 
    Keymaster

    I’m currently working on a column about my experiences with pulmonary function tests (PFTs). I used to really hate doing these as a kid, but I’m writing about how I got used to them over time and what that process has been like.

    For those of you who are unfamiliar with PFTs, they’re basically a series of breathing tests designed to track a person’s respiratory levels. The tests are a combination of deep breaths in and out, fast and hard breaths, and blowing out air into a tube. It’s exhausting to do them, but they do help.

    What has your experience been with PFTs? What questions do you have about them for you or your child?

  • #17480
     Ryan Berhar 
    Keymaster

    I’m sure I did more as a kid, but the only one I remember doing was about a year ago. I did it to make sure I could handle the surgery I ended up not doing haha.

    • #17500
       Kevin Schaefer 
      Keymaster

      It’s interesting. I’ve learned in the past few years that a lot of SMA people don’t see a pulmonologist on a regular basis. I’ve been seeing mine since I was in middle school. Granted, I’m 30 minutes away from one of the best hospitals in the country, so I know I’m fortunate. A lot of pulmonologists aren’t as knowledgeable about SMA, which is unfortunate. But yeah, I detail my experiences with PFTs in my next column.

  • #17493
     DeAnn R 
    Keymaster

    I didn’t even know what a PFT was until I started to pursue Spinraza.  It really would have been interesting to see how my lung function has changed throughout the years.  Maybe it would be depressing though.  I’ve only done 2 so far.  My third may be coming up with my next injection in March.

    • #17501
       Kevin Schaefer 
      Keymaster

      When I was younger I was frustrated by them, because my levels were really stagnant. But as you’ll see in my next column, I did improve over time. It’s something I hated doing when I was a kid, but I’m glad I stuck with.

  • #17502
     Kelly Miller 
    Participant

    I know I sound like a broken record, but when I was a kid, it was way back in the late 60s. The only pulmonary function test they had was at the MDA clinic, and I absolutely hated it. They’re very archaic way of testing a person’s breathing abilities was that little contraption with the balls in it that you are supposed to make float to the top. I would blow & blow and never get the balls to move even a smidge! It was demoralizing as well as irritating (an understatement). When I turned 18, I told my parents I was no longer going to the clinic because I didn’t feel like it did anything for me, and I didn’t have a pulmonologist anymore until a year ago.

    Although I’ve had many pneumonias, I just haven’t bothered getting a pulmonologist because I figured they wouldn’t know any more about SMA than any of my other doctors, so I wasn’t in the mood to teach someone else about my issues. I figured I would just stick with the GP. After getting in a group for people with MD on Facebook last spring, I learned that a PFT was essential for someone with muscle weakness from a neuromuscular disease, especially while I was well, to get a baseline. I researched for a pulmonologist that would listen to me and who might know a little bit about SMA. I chose a young woman who had been practicing about 5 years, thinking her age and proximity to med school might give her newer information about therapies and devices. I chose right.

    When I went for my 1st appt, I planned on letting her do all the talking so I could see what kind of knowledge she had. That was difficult because I’m really used to taking the lead in all of my medical care. In her exam and wrap-up, she told me that I needed to get a PFT, and that I might need a BiPAP if my carbon dioxide levels were too high. I told her another pulmonologist had tried to get me on a CPAP instead (an idiot obviously), and she said CPAP’s aren’t the proper treatment for someone with SMA. Joy! I had someone who knew what the heck they were doing!

    I did get a PFT, and my levels were not good. My carbon dioxide was around 38, and my lung function was very, very low (9 sticks out in my head, but I seem to have blocked it from memory.) She put me on a BiPAP for nighttime sleeping, gave me a suction machine, and a cough assist (those last 2 were my request), but I wasn’t able to handle the BiPAP. I think I just don’t have it in my head that I need it yet because I don’t have any morning headaches, sleepiness, or feelings of exhaustion. My psyche would not allow me to get the whole breathing rhythm thing down, so I gave the machine back and told the respiratory therapist that maybe I would try again in the future. She didn’t look very happy, just shook her head, and packed up the machine.

    I know my Dr. is going to want an explanation for why I’m not doing it, but as with so many other things, she’ll just be one more in a list from whom I’ve ignored instructions. I’m not saying I’ll never do it or that it’s a stupid idea. I’m saying I’ll keep the possibility in my back pocket for future consideration when my breathing gets really bad. Unfortunately, I do realize that this method of dealing with the problem is probably going to cause me to bypass the BiPAP and go straight to the vent when the time comes.

    • #17505
       Kevin Schaefer 
      Keymaster

      I can imagine that pulmonary resources back then paled in comparison to what they are today. Even today, like you said it’s hard to find a pulmonologist who knows enough about SMA. I’m fortunate in that regard, but I know it’s tough depending on where you live. I’m glad that the one you have now knows what she’s doing. It makes a world of difference.

      Regarding the BiPAP, I get that it’s just one more thing. I will say though, they’ve evolved a lot since when I was a kid. The machines I used when I was younger were loud and annoying, and the face masks were a pain to deal with. Today, the nose masks are much more comfortable, and the machines themselves are significantly quieter.

  • #17507
     Kelly Miller 
    Participant

    Yeah, I think I tried every mask known to man last spring. Several people recommended the nasal one, but I just couldn’t deal with any of them. I felt like I was struggling to get the rhythm of breathing with it. I also felt weaker after taking it off and switching to breathing without it. It made me more afraid that I would lose the muscles I have and no longer be able to breathe off of it.

    • #17508
       Kevin Schaefer 
      Keymaster

      It is a struggle for sure. You have to do what’s best for you. Still, I’d be happy to answer any questions about my experiences with a BiPAP.

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