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    • #17568
      Kevin Schaefer
      Keymaster

      So, I’m fortunate enough to live thirty minutes away from Duke Hospital, which is where the majority of my doctor appointments take place. The clinic I go to for PT and MDA clinic appointments is right next to it, and I go to the main hospital for pulmonologist appointments and my Spinraza injections.

      I know for others though, it’s less convenient. I know people who travel out of state for Spinraza injections, and who also have to travel for regular appointments.

      If you’re in this boat, what kind of extra steps are required for you to get to your appointments? Does it affect how many times you’re able to see a doctor or specialist during the year? Parents are also welcome to join in here.

    • #17611
      Halsey Blocher
      Participant

      Fortunately, most of my doctors are in town. My pulmonologist, however, is about three hours away. He has a satellite office that is only an hour and a half as well. The down fall of that is that he is only there once a month, so we have to try to fit whichever day he is there into our schedules. We travel to his main office once a year for the SMA clinic. We usually arrive a day early and spend the night so we don’t have to get up quite so early. And the staff know I’m not a morning person, so they try to book afternoon appointments when they can.

      • #17622
        Kevin Schaefer
        Keymaster

        That’s good that they’re flexible, and at least you only have to go once a year to his main office. I applaud the families who travel to another state every few months for Spinraza injections. I’d be exhausted if I had to do that.

        And yeah, I’m definitely not a morning person either haha.

    • #17623
      DeAnn R
      Keymaster

      Thankfully, as with Halsey, most of my docs are relatively close.  I actually don’t have a pulmonologist because if I did I’d probably have to travel at least 2 hrs.  I qualify for medical transportation services, so that helps for those longer trips.  My Spinraza injections are 2 hrs away, so it gets to be a log day.  As you said I can’t imagine having to travel out of state.

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