I also had a lung perfusion test (non-invasive scan) to see if there were any clots in my lung. there are several other non-invasive tests that can be done: cardio pulmonary stress test, various lung capacity tests, 6 minute walk test, etc.

Lifestyle accommodations will depend on each individual. For me, I had to get a wheeled walker (provided by Medicare) and I spend all my mornings at home due to the diuretics. I still consider my life to be quite full even though there are a lot of things I ccannot do any longer...like do any air travel. But there are many people on this board that are able to continue doing that...even if they are on O2.

So you'll gradually find out what you can and cannot do as this continues.

And the next Mayo site about diagnosis: https://www.mayoclinic.org/diseases-conditions/...

Pulmonary hypertension - Diagnosis and treatment - Mayo Clinic

https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/diagnosis-treatment/drc-20350702

Here's a link to the Mayo site: https://www.mayoclinic.org/diseases-conditions/...

Pulmonary hypertension - Symptoms and causes

https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

@A myPHteam Member this is a good, straightforward PAH site: www.pahinitiative.com. PAH Initiative has a very informative video series. Ignore the statistics for long-term prognosis. They are based on old numbers when less was known, PAH was diagnosed much later in the game, and there were not as many treatment options. Everyone being treated for PAH now are changing the long term prognosis numbers. There are lots of clinical trials, lots of new medications in the wings. You will also find lots of people in this group that have been treated successfully for PAH for many years. I was diagnosed in 2022. However, I began experiencing symptoms in 2013. I saw several cardiologists but no one could find anything wrong until my wonderfully astute pulmonologist solved the mystery. Based on statistics, I have already exceeded the 5 year long term prognosis. And better yet, a year after starting PAH medications my pulmonary pressure (by another RHC) is now within the normal range. Both you and your husband need to take a proactive role in his PAH management rather than a reactive role. Does this make sense?

Mentioned Users

A myPHtea...

PAH Initiative Official Website

https://www.pahinitiative.com

Deb: Two things that your hubby can do immediately while waiting for all the testing to be done, if he has any swelling in his feet or lower legs, have him sleep with his feet slightly inclined. At the same time, sleeping with his head elevated might make him more comfortable at night. I already had an adjustable bed due to my hubby's having GERD, but now I sleep with my feet slightly elevated but my head elevated at close to a 45 degree angle. You can easily find foam wedges to prop up his head and a cushion or pillow under his feet would do nicely.

Also, immediately cut out all caffeine. That means no caffeinated coffee, no colas, no chocolate.