• My son was diagnosed at 8 years old and immediately placed on IV Flolan. He learned quickly the importance of making sure no-one every turned the pump off, even medical staff who might not be family with Flolan. At a young age he knew a lot about PH and how to explain his condition, limitations and needs to others. He learned how to speak up…[Read more]

  • Great topic Brittany! In regard to both his PH and post-transplant treatments, just the thought of any new treatment would often make my son stressed because it was inevitable that there would be side effects of some sort. As he got older he handled the anxiety by extensively discussing the pro’s and con’s of the treatment with his doctor. He has…[Read more]

  • My son needed the most motivation to move around whenever he was in the hospital. Sometimes his team didn’t want him out of bed but often it was required that he get up and walk a bit in the halls. This was especially important when he was waiting for the transplant call. It was part of keeping him strong for transplant.

    However, you can imagine…[Read more]

  • Shannon, it was good to hear an update from you. I was wondering how things were going. It sounds like you have amazing support all around, from your medical team to your family! Having that kind of support makes all the difference in the world!

    A pacemaker was the next step my son’s team was going to take but the day he was going to have it…[Read more]

  • Are living with PH and Sickle Cell Disease or another type of anemia and/or blood disorder? Which were you diagnosed with first and was one the cause of the other? Share your experience of living with and treating both diseases.

    Here is link that discusses the coexistence of PH and Sickle Cell…[Read more]

  • Colleen Steele posted a new activity comment 3 days, 1 hour ago

    Welcome Geraldine to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look forward to learning more about your personal journey.
    • Summer just flew by as usual, didn’t it? Have you or are you about to return to high school or college? Share with us your first week back experience. Did everything go well, especially in regard to your health, or were there struggles? Have a great school year!

    • I just want to jump in and thank everyone for responding to Randy. It’s so great to witnessing the guidance that we give each other. I don’t have experience with SubQ Remodulin or I would have added some advice. I’m more familiar with Carol’s experience and from that I can sympathize with the pain and discomfort. My son had a central line for IV…[Read more]

    • I’m trying the Keto diet too Jimi. Let me know if you try any good recipes. The Fall is such a great time to get time walking. As you mentioned, the weather is cooler and the scenery is often beautiful too. Enjoy!

    • Colleen Steele posted a new activity comment 3 days, 22 hours ago

      Welcome Jim to the PH Forums! I read in your profile that you were diagnosed about a year ago. What were your symptoms at that time and how are you doing now? I see that you live in NJ. I was born and raised in South Jersey but live in WA now. Thank you for reading our columns and for joining the forums. I’m certain that you will receive…

      [Read more]

    • Colleen Steele posted a new activity comment 3 days, 22 hours ago

      Welcome Donna to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your many years of experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look forward to learning more about your personal journey.
      • Colleen Steele posted a new activity comment 3 days, 22 hours ago

        Welcome Kelsey to the PH Forums! I see in your profile that you are on Revatio and Tracleer. My son took those as well. How are they working for you? I also see that you are on the transplant list. My son just celebrated 5 years post tx so let me know if you have any questions. I’m certain that you will receive lot’s of support and…

        [Read more]

      • Colleen Steele posted a new activity comment 3 days, 22 hours ago

        Welcome Juliet to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look forward to learning more about your personal journey.
        • It’s common to hear people say, “I’m tied of working,” but what if you are in every sense of the word, really tired? How do you deal with fatigue when you are working, whether at a place of business or when working from home? How understanding are people that fatigue is a real problem for you? Share your experience and tips on how to manage work…[Read more]

        • Colleen Steele posted a new activity comment 4 days, 19 hours ago

          Welcome @smiley7 to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look forward to learning more about your personal journey.
          • Colleen Steele posted a new activity comment 4 days, 19 hours ago

            Welcome Nicole to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look forward to learning more about your personal journey.
            • Colleen Steele posted a new activity comment 4 days, 19 hours ago

              Welcome Tamara to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look forward to learning more about your personal journey.
              • This is a little “off” compared to things we usually discuss but, what are your “normal” pet peeves? Do you often feel or are made to feel by others that because of your life threatening disease experiences you shouldn’t get upset over the little things that other people stress over? For example, I HATE food shopping because to be honest, people…[Read more]

              • I added the picture to your post @kathleen-sheffer. Thanks for the recipe!

              • Oh, this sounds really tasty Kathleen! Cullen likes to cook and try new recipes so I will share this with him! Looking forward to reading your next column.

              • Load More
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