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In reading posts and profiles from several members, I get the impression that there are several people who have been misclassified as having PAH Group 1, when they are possibly really in Group 2 due to Left Heart Disease. I myself was initially misclassified.
If you have a history of heart failure or other cardiac issues but have been told you are in Group 1, PLEASE CHECK YOUR WEDGE NUMBERS FROM YOUR RHC REPORTS. If your Wedge number is over 15 you are in Group 2. If your number is 14 or 15, a… read more
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Members responded to a post about the critical importance of checking wedge pressure numbers to ensure proper pulmonary hypertension... Read more
LOL. I am really horrified at how many doctors are doing RHCs who don’t know how and when to do the Fluid Challenge. And how many cardiologists and pulmonologists claim to have PH as a specialty when they truly don’t. The more I learn, the more I am convinced that PH patients need to be seen in actual PH clinics no matter how geographically inconvenient it is.
And I am also always disappointed when I hear patients just accepting things at face value.
Maybe because many PH specialists evolve out of the pulmonologist sector and Group 2 is so Cardiac driven. I am really lucky then since my PH specialist, while he is a pulmonologist and critical care specialist, seems to be really on top of each WHO group and all the various approaches and requirements. He just recently also hired an NP whose background is cardiac into the clinic practice
Thank you Heather. I looked up my number on the RHC done this past march. I appreciate the education and will pass along in support groups I attend.
Hi Heather, good info. I looked at my RHC and my wedge pressure measured 10 and I'm diagnosed with IPAH. I had a hard time finding it though because it isn't marked PAWP. Mine is listed PCW for pulmonary capillary wedge. Thanks
@A myPHteam Member I am finding that PH specialists do not necessarily have knowledge about group 2 management. I believe that one of the biggest hurdles is not being able to interview and hire a specialist like one would do hiring any other contractor (say like if one wanted their home painted … interview and research 3 and compare/conteast). I have yet to find a medical system that allows anything like this. Hence both patient and practitioner both get frustrated.
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