There are a great many PH patients who have to travel overnight to see a bona fide PH specialist. Since PH specialists are so rare, they are used to people traveling in from distant places and generally can accommodate people with compressing testing to the overnight stay or arranging for partnering with local providers to do some testing near home base. Then subsequent routine follow ups can be via Zoom or FaceTime.

Thank you! I have to travel a hour away from me and like you said not many Dr in this field.

Judy It is best to ask your Doctor what group you are in! It is hard to find a Doctor who knows anything about it. You are located in a rural area, which can make it worst. I to am in a rural area and have to travel an hour to 2 hours for PH help! God bless you!

PH is divided into both sub-groups and then separately class levels.

First step is that you MUST have a diagnosing Right Heart Catheterization to confirm that you have PH. If you have a MEAN arterial pressure measurement (mPAP) above 20, then you have PH. 20-25 is considered borderline. 25-30 is mild, and so on.

That same RHC will measure your Wedge Pressure amount. (PAWP) If that measurement is over 15, then you are in Sub-Group 2 which is caused by Left Heart Disease.

The other sub-groups would be either confirmed or discounted based on further testing of different types.

IT IS VITAL TO KNOW WHICH SUB-GROUP YOU ARE IN TO DETERMINE WHICH TREATMENT PATH YOU SHOULD FOLLOW. The treatment protocols are NOT interchangeable and can be dangerous for you if you are taking the wrong one.

Many pulmonologists and cardiologists will think they know a lot about PH but they really don't. It is important to be under the care of a true PH specialist...even if you have to commute a distance to see them a few times a year and get your testing done by your more local care team as ordered by your PH provider.

The class levels are determined jointly by you and your PH provider, based upon your symptoms.

I am PH Sub-Group 2, Left Heart Disease, Class Level 3, Mild.

PH is NOT staged like Cancer would be. They use terms like Border-line, Mild, Advanced, End Stage.

Once you are undergoing treatment, your numbers should at least temporarily improve. That does NOT mean you no longer have PH. PH is permanent and progressive but the appropriate treatments can relieve symptoms, temporarily improve your numbers, and buy you significant additional time.