I was diagnosed with PAH in 2022. Mine is caused by a autoimmune rheumatic disease called Sjogren's. After diagnosis I started almost immediately on Tadalafil. A couple of months later I started Ambrisentan. I also take a diuretic, Bumex, on a daily basis. When it becomes necessary, Tyvaso will be added to the mix. On diagnosis my pulmonary pressure was 36. A year later it was down to 17. Surely there is more that can be done to treat your condition. If you haven't done so already, PAH Initiative has an excellent website (www.pahinitiative.com)

Thank you so much for sharing...just trying to get my head around this problem that presented itself,,,,and I am a seeker for info!!! We have Dr appt next week with a family physician. Norm is 83 and I think his is inherited. He has had other heart problems in the past so we will get more info. Hope you can find out some good solutions. I will share what I discover. We live at an altitude of 6,700 so wondering if we will need to lower the lifestyle!! My Dad was 89when he was diagnosed but lived at our high altitude until 95!!

I was on combination therapy (tadalafil, opsumit, furosemide, eliquis, jardiance) but my side effects from the tadalafil were too severe so I have been off that for a month now. I will find out in about a week if I am going to try sildenafil instead. I hope so.

I am not a doctor. But I am wondering if a blood thinner might be helpful for you. Could that be helpful for both your clotting disorder (Unless the disorder is that you do NOT clot) as well as managing the blood flow through the heart, especially with a history of stroke? Good luck with your trip. Let us know how it works out.

Katie, Thank you for your post. I have always been "a seeker for info" believing knowledge is power. However, with this diagnosis, every time I started to look online, the info looked so scary that I was like "nope, I refuse to think I'm not going to be here in a couple of years". They really need to update that information! So much has apparently changed and there is more treatment and reason for hope. I'm very glad to be a part of this group because now I can lean back into knowledge to quell fear, and find balance. I hope your Norm finds more good days and strength. I have heard some things about altitude. Keep us posted. Thank you and wishing you all the best!