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    • #21849
      Colleen Steele
      Keymaster

      Sadly, PH doesn’t take a break for the holiday’s. What appointments, treatments or procedures will be on your mind in December? How will you keep these concerns from putting a damper on your holiday festivities? Share what is on your medial calendar so we can support you through the events.

    • #21865
      Carol alexander
      Participant

      Hi well iam doing my first 6 minute walk iam really upset about it don’t think I will do well.Put me on Sildenafil I guess they want to see if I have improved on it the Adempas stoped helping me.

      • #21901
        Brittany Foster
        Keymaster

        How did your first 6 minute walk test go? when is the date for this testing ? I will be thinking of you!

    • #21897
      Vanessa Vaile
      Participant

      Clear here, although I want to touch base with new primary about local support if I pass screenings for CXA-10 trials and can manage the logistics of extra travel. November was the toughie — all day year end assessment tests and appointment the same week as Thanksgiving. Next year, I definitely want to avoid that. Getting in two long walks the week before may not have as good an idea as it seemed at the time. I lose track of just how far ahead to think about such details.

      • #21900
        Brittany Foster
        Keymaster

        Hey Vanessa,
        It sure is easy to lose track of appointments and what we need to remind of self of. Some days I feel like I can really do a lot more physically than what my body may be allowing at the time. I have been trying to focus my attention at gaining some weight back and finding foods that don’t give me as hard of a time to digest and actually keep down. I recently got my tube for feeding removed because I just couldn’t tolerate the amount of pain I was in and I found myself just avoiding getting nutrition from it all together because I couldn’t deal with discomfort from it. It is a decision that I had to make for my happiness and peace of mind even though medically it was really hard.

      • #21923
        Colleen Steele
        Keymaster

        @vanessavaile it was the same here but a week before Thanksgiving. My son went through all his big tests and procedures which finished on his birthday. He was a little too exhausted to celebrate it much. Glad to hear December is looking nice and clear for you. Enjoy and happy holiday’s!

    • #21924
      Colleen Steele
      Keymaster

      @carol-alexander I hope your 6 minute walk went well, but even if it didn’t, remember the reason for it is to assess how you are doing so that your doctor can better evaluate and adjust your treatments.

      My son was on Sildenafil among several other treatments, but it did seem to help him. Keep us updated on how you are doing with it.

      • #21943
        Brittany Foster
        Keymaster

        Carol and Colleen,
        I know the feeling of the 6 minute walk test. It is hard to go through it, especially because it leaves you feeling pretty fatigued after (at least that’s how it is for me) . But like Colleen said, it can help the doctors better see how you are responding to the medication (or not responding to it) and they can make changes accordingly from there.

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