Hello Susie and welome to the PH community. I was diagnosed in November 2022 having PAH from having a autoimmune disease Scleroderma. It is very scary at first. But if you have yourself a good PH Dr and go to a good PH clinic and they get you on the right medications you will fill alot better. Before I was on any meds I could not even walk a couple feet and I was so out of breath and that was with oxygen. After being on medications I am able to do 2 20 min walks a day again and it may not seem like alot but I am proud of it because I thought at first my walking days were completely over and I am believing in time and witg God's help and strength I will be able to go farther. I am sending you prayers 🙏 and hugs 🫂 your way. God bless.❤️

I went to ER a couple weeks ago for a fall. The PAH and an aortal aneurysm were a complete surprise in the CT scan. I've only seen my PCP and he's referring out. Right now I'm on vacation in Nebraska that we've been planning for months, I didn't want to ruin everyone's plans so I didn't say much about it to anyone. The Dr said I should be ok until I get home, but at that time I have to start test immediately, I have no #'s or anything yet.

I'm long winded also ☺️
But I've been not feeling well for over a year now, so tired I sleep for days sometimes, coughing, numbness in my arms (painful), short of breath etc. I've been really hard on myself because I couldn't figure out why I wanted to sleep all the time and was getting so lazy. I'm a hard headed independent person myself and this has got me overwhelmed. I don't look sick, but I guess I am😞

I smoke to, since I was 15 and I'm now 60 ugh my problem is I enjoy smoking and don't want to quit. Which I don't think many people can understand. I also have stage 4 cirrhosis. Since I'm just finding out about the heart and lung issues I can't get an appointment until 2mo out, which I think stinks! So anyway, I'm just hanging out and worrying

Thanks Susie for sharing your feelings. I've just found out last week that I have PAH too.I've had COPD for many years now and never really did anything about it until I had a stroke last September 25th, 2024. I was very addicted to smoking and FINALLY I've quit! I also was told 13 years ago that I have Systemic Scleroderma and Porphyria Cutena tarde...ugh...My scleroderma is more internal with skin tightening of my internal organs. Porphyria (a rare blood disorder) causes my body to make to much iron. But I am anemic. Go figure.
In 2013 I was told I too, I had a aortic aneurysm and had open heart surgery to clear that up and while they were inside my heart area, the surgeon replace my aortic heart valve. Everything was fairly okay with my health except that I kept on smoking cigarettes and was warned by all my doctors to quit. I'm new to this page and glad to hear that I'm not alone. Although I am scared too. I'm not sure if we are aloud to have phone conversations or how that works. I should copy and paste this message I just wrote and put it under my PHteam homepage...thanks for listening, I'll be Praying for You and All of US on here.🙏🏻❤️🙏🏻❤️😔

By the way... Thanks for your kindness 🙏☺️