Viewing 7 reply threads
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    Posts
    • #30458
      Jen Cueva
      Keymaster

      We here at the PH forums are hoping that everyone who joins us enjoys their experience here. Our goal is to help others and support you all as you navigate the PH life.

      If you’ve been enjoying the forums, please tell others about us. So many are lacking connection with others within the PH community. You may want to invite your family, friends, loved ones, or your healthcare providers. We are an all-inclusive group that loves to have new PHamily join us.

      Together, we are stronger.

      Who will you share your thoughts and what you enjoy most about the PH forums with this week? Please help us spread the word.

    • #30468
      Roger Bliss
      Participant

      I enjoy the forum.;-) I never heard of PH before I got it. Don’t know anyone outside the forum who has it. I’ll have to ask my doctor how many of his patients have PH, maybe some of them will join.

      • #30477
        Jen Cueva
        Keymaster

        Hi, @wheeldog; I am happy that you are enjoying the forums and learning more about PH. We are enjoying having you here, too.

        Yes, some PH doctors and nurses are unaware of our site, so share away. I told my PH nurse to send any new PH patients this way if they want more support.

        Again, good luck with your appointment on Friday. We look forward to hearing about it.

      • #30492
        Colleen Steele
        Keymaster

        @wheeldoger that would be great if you can share the forum link with your doctor so he can offer it to other patients. That might also help you connect with someone being treated at same clinic. It’s been my experience that communicating and sometimes meeting up with people who I have that much in common with is very helpful.

    • #30481
      V.R. Peterson
      Participant

      I’m enjoying the forums. Sometimes I find information that’s helpful and pertinent to my son (the one with PH). Sometimes I’m able to help. Either way, it feels fulfilling when it happens. Thank you all for being her for each other!

      • #30505
        Jen Cueva
        Keymaster

        Well, hello, @mamabear007; I am grateful for you and the posts that you share that helps others, too. You have added to the discussions that are helpful for ourselves and others. You are an awesome supporter, too.

        It makes my heart happy that you are enjoying and sharing things that your son may relate to. You are so kind and thoughtful, thank you.

    • #30485
      Cathy Brown
      Participant

      I enjoy reading the forums because you all do an excellent job moderating them. However, I find it easier to participate in Facebook PH groups because there is no need to remember a password and one time I tried to post here it was glitchy and didn’t work.

      • #30506
        Jen Cueva
        Keymaster

        Hi @catbrown, I hate to hear that you are having difficulties posting. As Colleen mentions, please do reach out to us anytime you are having any issues.

        My favorite thing is the remember me a suggestion on sites like ours and FB, etc.

        Any posting issues, we can send that to the IT department, so please do not let that keep you away. I am sorry to hear about this issue. We do want to make this as simple as possible and enjoyable for all.

        Will you try again and let us know when and if you are having issues?

    • #30487
      Colleen Steele
      Keymaster

      @catbrown I’m sorry you have experienced difficulties while posting. If it happens again please direct message either @jenc or @colleensteele. Tell us what error message you are receiving, if any, which sub forum you are trying to post to and what you want to share.

      Will will post it for you and contact IT to figure out what the issue is.

      You should be able to save your password to your computer or tablet so you don’t have to enter it every time.

      We want the forum experience to be a positive one so that you for sharing what could be improved.

    • #30489
      Colleen Steele
      Keymaster

      @mamabear007 you have been an asset to the forums. Thank you for your participation and for trusting us to offer you support as needed.

    • #30494
      Valerie
      Participant

      The power of these forums cannot be overestimated!
      The doctors told me, “This is a very very rare disease, “no one knows exactly how to diagnose and treat it”. I felt like a lonely “lucky” girl who might not have long to live.
      I opened these forums thanks to Brittany’s note. I found out that I’m not the only one! I learned that doctors are not so ignorant. I learned that strangers can support you, not be rude, not ignore you. I am so grateful to you all! Maybe I can’t always say something on the topics. But the very idea of a forum makes life easier. And the keymasters are just great! You’re gorgeous!

      • #30497
        Colleen Steele
        Keymaster

        @valeriekv it feels so good to hear members share how much the forums have helped. I do believe we have a great group of people who help make this resource what it is.

        I’m so glad you found us and learned that you are not as alone as you first thought and that the right doctor can make a big difference when living with this diagnosis.

      • #30507
        Jen Cueva
        Keymaster

        Hi @valeriekv,
        Your post made my heart happy. I am grateful to hear stories like yours that you feel comfortable here and learned so much. I appreciate the kind words and hope that you continue to find the forums helpful for whatever you may be dealing with.

        We know that PH is overwhelming, and feeling alone and scared at first, is common and normal. But finding some support like here within the forums, we connect with others who may have been through or going through the same thing.

        Learning that you can find a doctor you trust and know is key and crucial for managing your PH.

    • #30499
      Sally Hoffman
      Participant

      Having the forum has made all the difference in the world to me. My journey has been a little less than three years. I found the forum right away, so I can’t imagine going through this without it. It has been a place to learn about the disease, both give and receive comfort and support. It feels like a home where all the relatives and friends and strangers understand. Thank you all.

      • #30508
        Jen Cueva
        Keymaster

        Aww, @mainegal, my heart is happy that you found us quickly and that you continue to enjoy the forums 3 years later. When I was diagnosed in 2005, it was a long time before I connected with others with PH. Once I did, it impacted my PH, and I could tell myself that I am NOT crazy.

        Please let us know how we can support you as you continue this PH journey with us. You are so kind.

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