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    • #25181
      Jen Cueva
      Moderator

      I have heard of some PH patients who are having difficulty obtaining medical supplies or medications since this Pandemic started. One PHriend went several days without one of her PH medications. AS I told her before it gets that low, let your PH center know that you are having problems getting your medications. Often the PH center can help with this process.

      I have also contacted my specialty pharmacy an extra week early to try to fill my PH meds. One pill this worked well. Another one, they said I had to wait about 4 more days before the insurance would allow them to ship it out.

      Have you had any issues obtaining medications or supplies related to your PH? If so, please share it with us. If you have tips for others, feel free to share here, too.

    • #25196
      Colleen Steele
      Keymaster

      Jen, so far my son hasn’t had problems getting his meds. When he had PH there were a few times that we came close to running out of something and were told if we didn’t get it in time they would admit him to the hospital so he wouldn’t go without. I know that isn’t ideal but if it’s a critical medication that should not suddenly be stopped, I would recommend asking if that is an option.

    • #25200
      Jen Cueva
      Moderator

      @colleensteele, I am happy to hear that Cullen is good as far as having his medications. You bring up a valuable tip. I know that the same rule is what my PH doctor tells me. Once when I was in the hospital and not alert and awake for several days, they switched me to IV meds for a few weeks until I could take my oral medications.

      I certainly can see why some may not want to go to the hospital, but these are life-saving medications that are not intended to be stopped or missed. Has anyone needed to go to the hospital so that you or your loved one would not go without PH medications? I know a few PH friends who have done this. They are mostly IV and Subq pump patients.

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