I believe we have to do our own investigation work and push the doctors. I've been dealing with PVCs and high blood pressure since I had my ovaries removed in 2019, which has been worsening every year. In 2023 and during a stress test, I had estimated pulmonary pressures of 37-47 and enlarged IVC. I then went to a cardiologist that specializes on PAH and she did an MRI, (which showed right verticle enlargement in relation to my left verticle, a cardio pulmonary stress test, came back great with my capacity at 145%). Most recently, and following my father's advice I changed my beta blocker from metroprolol to Bisoprolol. After 3 years of worsening, for the first tine my stress test results showed no PVCs during exercise and estimated pressure during exercises of 30-35 (IVC was. Still dilated, but definitely there was an improvement since switching my medication). The cardiologists don't know what's causing it, so I'm going to a pulmonologist specialist next. Why do I explain all this... I have found that doctors only look at few data points to come to conclusions, and I think this is a grave mistake when trying to catch things early. Yes, I have a very good exercise capacity because I've exercised my entire life, but at this point I have two cardiograms and one MRI that points towards a mild exercise induced PAH. Why not tackle the issue now before it gets worse with a relatively low risk and cheap medication like Tadalafill? I plan to go to my pulmonologist with all the results and propose a preventative treatment. In my opinion, while the medical industry is quicky changing, it is not changing fast enough. Our approach should be focused on prevention vs fixing the issues once they've come up.

I agree. Push for referrals. I went to my PC with heart palpitations and chest pain and shortness of breath and asked to be referred to a cardiologist or pulmonogist and ended up in the ER. Tests run, normal except unexplained shortness of breath. Sent to a pulmonogist who was smart enough to send me for a right heart cath. And a diagnosis. I had to do a lot of calls for appointments and test results myself but it worked.

As with many medical conditions, there is often a long and tedious process to arrive at the proper diagnosis. This is why it is crucial as a patient to report all symptoms no matter how trivial they may seem, push for referrals to specialists, and take a proactive role in their medical care.

I started experiencing PAH symptoms in 2013 but was not diagnosed with PAH until 2022. Because I was experiencing not only SOB but chest pain and heart palpitations, I underwent two very extensive cardiac workups over the years leading up to my diagnosis. I even had a cardiac catheterization (not a RHC). The workups revealed nothing of serious consequences. I pushed for a referral to a pulmonologist. Initially I was diagnosed with allergic asthma. However, because I have Sjogren's the pulmonologist said it was only a matter of time before I developed something else. Sure enough, a year later I had developed mitral valve regurgitation. I underwent another heart catheterization and was diagnosed with PAH.

Just to clarify, my rheumatologist sent me to the pulmonologist, who did the testing for PAH. I've had no heart problems, so I don't see a cardiologist on a regular basis. Everyone have a good day! 😊

If it wasn't for my rheumatologist taking an echo every year, I probably would not have been diagnosed so soon. It was 6 months total from echo to rhc to medication. I think a lot of people have taken forever to be diagnosed. I also think it may have something to do with the type of doctor you are seeing.