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What Is One Thing That Would Have Helped You When Newly Diagnosed With PH?
We have had some new members lately that are newly-diagnosed. If you think back to when you were newly diagnosed, what is one thing that would have been helpful to you? I know that when I was diagnosed, I was in shock and overwhelmed. I felt lost and was unsure how PH would affect my life. I worried about my family.
For me, I think that reading and learning about PH was helpful. I started at the PHA site, but this was a few months after my diagnosis. I did not talk with other PH patients until a few years after my diagnosis. But finding people who had PH, who understood what I was going through was huge. I finally started to think that I would be OK. I was not crazy. This was all real, and they understood me. Talking with others and bonding in a group that offers support is important. I think for me, this was the most helpful.
I also had one of the top PH specialists who I adored and trusted, that is also something that some PH patients may not have available.
What about you? What is one thing that helped you the most when you were newly diagnosed with PH? Let’s talk about this and share with our newly-diagnosed members.
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6 Replies
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Jen, like you PHA and seeking care from a trusted PH specialist was the best first steps for us. My son’s PH nurse introduced us to a few PH families who then directed us to an on-line support group. At the time it was a support group through e-mail but later transitioned into a FB group that is still growing. I really think the best think to do is communicate with others living with PH. so for all those here in our PH forum…this is a good start.
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@colleensteele, I agree by having someone to communicate with when newly diagnosed is so helpful. As I said, I did not know anyone with PH until months after my diagnosis. I was so excited to find that others “got” me and understood what I was dealing with.
That is why I love the forums so much. WE can offer support and learn from many others as they share their PH journeys.
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This has truly helped me having a group of people I could relate too, since im still trying to figure this whole condition out. Its nice to have people I can talk too and make positive changes.
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Hi @owensgirl1, I agree. I know that having others who are experiencing what you are can be helpful. I have had PH for 15 years. I have been on almost all of the oral medications for PH. I am grateful that I can be helpful to others, and also that I continue to learn from others here daily.
This is such a close-knit group that I have enjoyed being a part of for a few years now. I recently became one of the forum moderators. I am so happy that I found the forums.
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Hey Jen,
Thats awesome! Im really loving reading about you guys and the advice you guys have as well. It really seems like a good place to get some guidance and positive reinforcement.
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Thanks, @owensgirl1. This is an amazing group here. So many of our members share kindness and support as needed. Please do not hesitate to ask any questions that you may have. We are happy to have you join us.
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