Well said Ken!

Thank you for elaborating more on your history. Please look up your report from your heart cath and tell me your wedge pressure number. It might be written as PAWP or PCWP in the report. If the number is over 15, you actually would be in sub-group 2 like I am. If the number is 14 or 15, you might need another RHC where they do a Fluid Challenge test to be certain of your group classification.

The reason I bring this up is that IF your PH is due to heart disease, (specifically LEFT HEART disease) then sub-group 1 (PAH) meds can be very high risk for you. Mitral valve is LEFT HEART.

That’s what happened with me. My Wedge is 14 but with the Fluid Challenge test it went up to 28!

Hi MSmith, I'm Julie. First off ket me start by saying I'm also 54. This isn't a death sentence, it's a condition we can live with for years with proper treatment. Start by seeing a pulmonologist if there's one close by and getting a referral to a PH specialist. YES, Drs can be wrong or overlap their diagnosis. I have Drs telling me I'm moderate PH and another stating I'm mild. Last week I actually found clarity from my sleep Dr. He stated the one Dr was looking at just my numbers while the other 3 were looking at ME. That actually made perfect sense because they saw the whole picture and it put me at ease finally. I too take tadalafil, 40 mg a day . It's a very common heart med related to viagra. I'm on oxygen 24/7. There are many great people who offer their experiences and support, don't hesitate to ask questions or tell us about your day if you'd like. We all have goid and bad days here. There are also really good resources.

God bless and stay in touch.

Sometimes the Wedge Pressure reading is labeled PAWP or PCWP. If you still can't find it, send the office a message via the portal and tell them you can't find where it identifies the wedge pressure and for them to point it out to you. Some rare times the wedge pressure test isn't done during an RHC as technically the wedge pressure measures the post capillary pressure from the left side of the heart. But it is an essential diagnostic test if the patient has ANY history of cardiac issues since that's the best way to determine if the patient is in Group 2. So, if the patient purely has a history of lung issues, maybe it wouldn't be done.

But since you have mitral valve (Left heart valve) issues, I would think it would absolutely have been done.

Now I am beyond curious.

Thank You!! I'm so glad I found this group!! I have seen my cardiologist for the last 6 yrs concentrating on my mitral valve when my pulmonologist recommends a right heart catherization So I went in for a right/left catherization a month ago. That's when the PAH was found! After having SOB for years!!! Anywho I've seen a cardiologist who specializes in valve repair I have not yet scheduled a surgery for him to go in & using a balloon open my mitral valve up. I have also seen a cardiologist that specializes in PH, this Dr says I'm in stage 3 of my journey. I did a 6 minute walk there & had to stop twice & brought oxygen.Also next week I'm scheduled for a MRI with contrast checking for blood clots/ scarring in lungs. I've had echos yearly for the past 8 yrs along with stress tests. I've failed to mention at the age of 40 I had a left cerebellum stroke that has affectedmybalance,headaches,memory issues & dizziness. So for the last 15 yrs I've been on anticoagulants. Did I mention I'm only 54. On a good note We are expecting grandbaby #5(boy) any day now. I've had the pleasure of being in the room with every grandbaby that's been born!! I have a great support system with my husband of 34yrs & 3 children & spouses. I'm truly blessed!! I want to be around for all of them as long as possible that's for sure. I'm hoping with medication & knowledge I can do this