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Hello all!
I'm a PH columnist at Pulmonary Hypertension News, on the Pulmonary Hypertension Association's Patient and Caregiver Education (PACE) committee, and a cohost of their podcast, PH Insights.
I'm wondering if there are any topics you'd like to hear more about. Although we have many topics to cover on the podcast and many goals for patient education, most of it is tentative. And my column is just me, so it's quite easy to veer off. Though we're covering a great deal of ground, there… read more
Answer Summary
Members responded to a columnist's question about desired topics for pulmonary hypertension education with strong interest in proper... Read more
Hi Jolie…I’m not sure this really addresses your question, but I am frequently frustrated by the number of people who THINK they have been diagnosed with PH who haven’t had an RHC, whose doctors jump to lump them into Group 1 IPAH without going through the entire diagnostic process, and/or who aren’t willing/able to commute inconvenient distances to see proper PH specialists.
So maybe that comes down to the need for really communicating the entire diagnostic process including the importance of WHO subgroup classification
Thank you for coming back to this platform. I look forward to your posting more often.
Hi Jolie. I have moderate IPAH and am currently participating in a research study for ralinepag, a prostacyclin receptor agonist. I was placed in the placebo group for 7 months, then put on the drug in early November, once it went into open-label extension. It titrates up and I'm currently at 250 mcg once daily. The only thing I can report so far are the side-effects that I have experienced. I was told it may go for FDA approval this year.
@A myPHteam Member Thank you for the input! We have a podcast that will cover trials and new medications. I believe it will air in March. I hope that it will be helpful for you and others. You can always listen to past episodes. I believe they are all still quite relevant. Thanks again for your reply!
Check out the podcast at:
https://phassociation.org/events-and-resources/...
@A myPHteam Member, I appreciate your kindness and support!
It does seem that many people are being told they have PH these days. I find it to be ignorant and reckless to tell patients they have a condition that can only be diagnosed by a right-heart catheter, and then not seeing that they get one.
I have a dear friend who was told she had PH. She was diagnosed in the emergency room after an ultrasound. I used to do sonography, so I asked to read the report while visiting my friend in the hospital. Nowhere in that report did anything suggest PH. He pulled it out of his hat, and she stressed over a diagnosis she does not have. I had to reassure her that she doesn't have anything in her medical chart to give rise to concern that she may have PH. I finally got a physician to review her echo and reassure her that there is no concern of PH.
Speaking of your other thought, I also met someone with PH who likes her doctor, so she isn't going to a specialist. She's in poor health and was put on oxygen and Winreviar ONLY. I tried telling her that she needs the gold standard of care, or at least something close to it. She's in the wrong ballpark! I tried to stress the importance of seeing someone at a PH clinic, but had to give up. It's stressful to see others make mistakes that can cost them years of their lives.
People want to hear from long-term survivors, but they don't follow their lead. So, this is a great topic, as well. I'm passionate about both. I've added it to our list of possible podcasts. I think I'll write about it, too.
Thanks again for sharing your thoughts! Please check out the podcast at: https://phassociation.org/events-and-resources/... and my column at: https://pulmonaryhypertensionnews.com/the-phlip...
@A myPHteam Member I also have some pre-capillary disease but am primarily post-capillary. My understanding is that the current Phase III clinical trial for Winrevair is for those patients like you and I who have some combined illness but who are primarily, and categorized, as Group 2. I am having a consult with my PH specialist on 1/27 to discuss that trial as well as have a routine follow up.
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