Table 4 Example quotations from participants about their PAH symptoms and impacts

Shortness of breath

I’ve just always had shortness of breath and can hardly breathe sometimes in daily activities …

Tiredness

I’m always tired. …Always. I could just get up from a 4-hour nap, and still want to go back to bed because I’m tired.

Swelling in ankles or legs

… when I used to have it in my legs and my feet, my legs were so heavy that I could hardly even walk, and my feet were so swollen.

Rapid heartbeat

I’ve had my heart rate go up with just sitting. I’m just sitting there and all of a sudden it starts beating real, real fast, and I have to take a few deep breaths to try to get it to slow down.

Physical activities

You know they say walk-how far can you walk. [laughter] Oh, about two blocks and I have to sit down or something, you know.

Activities of daily living

…I’m the cook, and [laughter] used to I’d go in and prepare everything all at one time. Well, now I go in and peel my potatoes and cut them up and put them on the stove or whatever, and I go back and sit down for 20 minutes, and then I go back and prepare something else, until finally I have it all going on the stove cooking, but you have to stretch things out. …

Cognition

Um, yeah, your thinking sometimes just isn’t—how can I—how can I describe it? You’re not able to think things through clearly like you had in the past. Um, there’s a hesitation. You know, you might be asked a question, and there’s a hesitation because you—you’re trying to put the pieces together to respond.

Emotional impacts

I mean, I think the biggest impact is just the worry about it, you know. I worry about getting sicker. I worry about what could happen. You know, I know the stories and how it can go. And you know in the beginning, you read all this stuff, and you think you’re not going to live a year so you start thinking about that.