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March 27, 2025
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Answer Summary

Members shared varied timelines for PH diagnosis, ranging from less than a year to ongoing investigations spanning multiple years, with most... Read more

Members shared varied timelines for PH diagnosis, ranging from less than a year to ongoing investigations spanning multiple years, with most emphasizing that right heart catheterization is the definitive diagnostic test while echocardiograms often serve as an initial screening tool. Several members described the complex diagnostic journey involving numerous tests including pulmonary function tests, sleep studies, CT scans, and multiple catheterizations to determine not just the presence of PH but also its underlying cause, with some experiencing misdiagnoses of asthma along the way. A recurring theme was the frustration of waiting and uncertainty, with insurance companies sometimes requiring higher echo readings before approving definitive testing, and the importance of persistence in seeking answers even when symptoms and test results seem contradictory.

A myPHteam Member

Diagnosing PH is a long and complex process. This is the list of tests I had to take in order to get to my COMPLETE diagnosis which includes the causality of the PH:

Bi-Heart Cath
Cat scan with contrast
Right Heart Cath x3 including Fluid Challenge in last one
Pulmonary Function tests
6 minute walks
Sleep Study
Lung Perfusion test
Traditional Echocardiogram
PH Protocol Echocardiogram with contrast
Bubble test

My first cath confirmed I had PH but then I had several of these other tests stretched over time to confirm the causality which in my case is Left Heart Disease.

March 29, 2025 (edited)
A myPHteam Member

Hi Heather, I'm a severe acute asthmatic and don't ever remember having that test. I know I've had a few pft's over the years. It's been 35 yrs since actual diagnosis, but had it at least 5 yrs before that. My symptoms were not good at all.

Bev, there are different levels of asthma. Having adthma does not necessarily mean you need O2. I have O2, but had my first asthma attack 40 yrs ago this summer. I've only been on O2 a yr and a half due to hypoxia caused by my PH.

March 30, 2025
A myPHteam Member

Yes.

Just as Right Heart Catheterization is the definitive test for diagnosing, the Methacholine challenge is the definitive test for Asthma.

March 30, 2025 (edited)
A myPHteam Member

So you were given a methacholine challenge? I had one years and years ago when I had a different lung disorder (Bleomycin Pulmonary Toxicity caused by chemotherapy) that was hard to diagnose and too many doctors wanted to label it asthma. The Methacholine Challenge finally convinced them I did NOT have asthma and they had to search harder for an answer.

March 30, 2025
A myPHteam Member

Suspecting is a matter of recognizing clues, but the confirmation is he results from my right hear catheterization. then it is a sure thing.

March 27, 2025

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