Hi there! I was diagnosed last fall and came home with oxygen. I started on three different meds that really helped. I now rarely used my oxygen during the day, but I do use it at night since my oxygen usually drops at night or when I’m sick. I would really push to get on some good medication. It can really help your body to function better. Have you done an echo and right heart cath? I would learn as much as you can and don’t be afraid to ask questions and get as many tests as you need to figure out what will help you. If there’s anything I’ve learned in the last six months it’s that everyone’s ph is so different! But don’t be afraid to advocate for you and your health!

hi! i was diagnosed when i was 9, so 2012, i very recently (within 2 months) hve started round the clock oxygen and brand new meds. i’ve been sitting without a then and breathing fine because of the medications! any exertion i still do need my oxygen, but my stats are improving while i’m exerting myself!

I take opsumit and tadalafil and they help with breathing, but I still need oxygen on longer walks. my O2 is in the low 90s now when resting.