April 10, 2020 at 4:51 pm #24403Colleen SteeleKeymaster
Were you or someone you know recently been diagnosed with PH amid the covid-19 epidemic?
I suggest that we all keep our eyes and ears open for new PHamily and make a great effort to invite them to the PH forums. There is never a good time to be diagnosed with PH but the news might hit harder during this time of worry and unknowns regarding the coronavirus.
Let’s make sure that new PH patients are aware that even during this time of social distancing, they are not alone. Whether it be PH or pandemic – we are all in this together.
If you were just diagnosed, how are you doing? Please feel free to ask questions and express concerns.
April 10, 2020 at 9:33 pm #24410
This is an important reminder. I cannot imagine being diagnosed With PH in the middle of this. How scary that must be for anyone, patients and caregivers, alike.
I agree that this is a time to invite them in and welcome all who join us. This forum is full of support. Let’s continue this as remember how overwhelming and scary it was when we were given a PH diagnosis.
Let us know how we can help.
April 23, 2020 at 10:32 pm #24757Kathryn DowneyParticipant
I was diagnosed on March 13. I currently feel frustrated as there is so much COVID-19 stuff and PH information, but I want to learn more about how IPAH and my future away from COVID-19.
However, what are my questions and concerns. I don’t know what to ask or what I need to know. A very confusing time for me and my family.
April 24, 2020 at 10:50 am #24765
Hi @kathroonie, welcome. I can understand your frustration being newly diagnosed during the time. A PH diagnosis does affect the whole family. Are you married? Do you have any children?
We are here to help and support you. I am sure that you have so many questions and not sure where to start.
I know that the initial diagnosis can feel overwhelming. You are not alone. What medications are you on for your PH? Are you seeing a PH specialist? What was going on when you were diagnosed? I am guessing they are unsure of the cause of your PH.
What have been your challenges within the last month or so since your diagnosis?
I hope that my questions are not overwhelming you. I have lived with PH for just over 15 years. I am trying to think of your questions and how we may better support you.
April 24, 2020 at 4:52 pm #24782Colleen SteeleKeymaster
@kathroonie I have been concerned for those newly diagnosed during this Covid epidemic. It must be overwhelming trying to learn about this disease while the world is bombarding you with information about a virus. The PH Association offers great resources that help answer questions and concerns. I am providing you with that link and the link to their store. There are a lot of free materials that they can mail out to you.
Please ask questions and express concerns here as frequently as you need. It might also help you to skim through the topics, new and old, that have been posted in the various PH forums. Many of your questions might get answered there but if anything, you will feel less alone.
April 26, 2020 at 10:17 am #24799
@colleensteele and @kathroonie that is such a fantastic source of information for anyone with PH. I suggest to all who have never read through these. I have an older Patient Survival Guide, and it offers such valuable information, too.
Thanks for this Colleen, I had forgotten this. I need to save this as a reminder to myself, too.
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