Table 4 Representative quotations for the most frequently endorsed symptom concepts

Shortness of breath

“Shortness of breath? Out of breath…Sucking for air. You know, I don’t know. I’m just out of breath. I’m not getting enough breath, enough oxygen in or something.” [1–7]

“Really if I’m walking, like even if I’m in the living room and I have to walk to the bathroom or go to the bathroom, it’s like I’m like [panting], like it’s cutting off down my windpipe by my lungs.” [2–4]

“…even if I just wash the dishes, it feels like I worked an 8-hours job, and you’ll be so tired. And if you’ve got an appointment, getting dressed, 4 hours. That’s with the clothes out, because it’s going to take that long. Because you’re going to have to stop and rest. And then if you don't stop and rest, your oxygen will go so low you’re going to have to rest until you get at least 97%. I had it go all the way down to 74 one time when I was getting dressed.” [1–3]

Fatigue

“Hmm, just feel kind of wore out [fatigue]. Just feel like you just tired.” [1–11]

“It’s according to all the activity or what I have to do that determines how fatigued I’m going to be. Like I say, I can go bowl and we’ll bowl from 6:00 in the evening and we’ll get finished about 9:30 or 10:00. […]. I’m okay. But if it’s something that say I have to walk to go somewhere, then walk back and then walk, that tires me out.” [1–7]

Lack of energy

“…Just tired, lack of energy, no motivation.” [1–7]

“Lack of energy is like you feel like you got the blahs, for me. For me, I feel like I got the blahs, and I’m just soaked out. But fatigue is like you’re just tired. You’ve exerted yourself. You did this walking at work, and you’ve stopped by the store and you darted in here. And you’re just tired. But the lack of energy is like oh, I feel like I can’t – I got to go and get me a cup of coffee. So, that’s what the lack of energy is for me.” [1–11]

Swelling in ankles or legs

“Oh, sometimes it looks like monster’s feet, you know? They’re so swollen that they look like – they don’t look like my feet. And it’s difficult to walk when they’re that swollen.” [1–8]

“Just holding water [swelling in their ankles]. They say my kidneys ain’t working or something wasn’t working right or something, but my kidneys are good. So, I think it was just the medicine, the prednisone, and the sarcoidosis together.” [1–7]

Wheezing

“[The wheezing is] not always there…But say I’m rushing to do something or I’m going somewhere and I’m getting ready, trying to get stuff together, carrying stuff. […].” [1–7]

“I can’t describe it. It’s just like a wheezing, like a hay fever or something like that, but I’m congested. You know, it’s like a lot of mucus, cold, and it’ll be down in my chest, and it causes me to wheeze.” [1–11]

Cough

“Oh, god, my cough can be downright terrible, because I’ve coughed so hard sometimes…my whole chest burns…[…]. I would just shake like, […], and I would have a bad coughing spell.” [1–1]

“It’s typically a dry cough, and it’s just a little nagging thing in the throat that makes it happen. […]. Because, otherwise, it’s kind of a dry cough, but over the years I’ve noticed it’s a deeper, harder cough, yeah. […].” [1–2]

Skin issues

“I started developing like these they looked like blisters on my thighs on both sides…So, I went to a dermatologist, and the dermatologist looked at it, at both of my legs. And I told her they don’t get well…They get a scab, but they come right back.” [1–11]

“I have some on my legs. They were raised and purplish. I have some on my arm. I have one, it was like a little row of them, and they were raised little bumps. […]. And they just come. I don’t know why, but they just come.” [1–9]