Table 2.

Patient descriptions of hemodialysis-related symptoms

Symptom	Quotationsa
Post-dialysis fatigue	‘It’s like something’s sitting up on your shoulders and you can’t wait to get home to lay down. It’s terrible.’ (58 years, male)
	‘Well when I go in, I can come hopping in. When I leave- unh-uh. Getting up out of that chair, walking to the scale even is an effort.’ (67 years, female)
	‘If I don’t go home and lay down, I feel like a drunk man. I feel worse and worse and worse. I have to lay down. I get that no good feeling. I don’t feel normal. You feel like something coming over. You’ve got to sit down or lay down or something. Then, after you get that nap in, you’re good to go, but I can’t leave here and be up all day. I can’t do that.’ (68 years, male)
Cramping	‘Well for me, I can give it to you on a scale from one to ten. It was about a twelve. To be honest, it’s made grown men cry. Cramping is very severe for a lot of people.’ (70 years, female)
	‘As soon as the cramps start, I'm yellin'. You never die, but it’s so painful you think that you do.’ (71 years, female)
	‘It hurts like hell and when it stops, there’s nothing that you can do to try and avoid it again … With me it starts in the toes and it feels like—you know how you roll up a toothpaste tube? That’s how it feels. Your toes are starting to curl up… The muscles react and they contract… You don’t feel it until you just feel it. It hurts. It’s very painful. It’s very painful. It’s hurting. It’s twenty times on a scale of one to ten.’ (53 years, male)
Thirst	‘And I have my cup of ice. A lot of people just love that ice… [Not having ice] would be devastating, because I love that ice, I do. I look forward to the ice. I sit there and chomp on it. It wets my whistle. It makes me less thirsty.’ (67 years, female)
	‘I’m always thirsty because of the fluid restrictions. During treatment, I do ice. I also chew gum, regular gum, bubblegum and try to keep myself as occupied as possible. The thirst never really goes away. I have cottonmouth.’ (59 years, female)
Dizziness or lightheadedness	‘Well I told them it’s not like the world is spinning. It’s like it’s waving. I mean that’s the way it feels. I look at things, and I sit there and watch the cows out in the field and they’re just doing this… going up and down.’ (76 years, female)
	‘Well, it’s a vision, too, but you’re really lightheaded, you’re just going to space out, you know. I looked at the tech and my eyes were—she was getting blurry, and my speech can get mumbled when it’s so severe.’ (67 years, female)
	‘Lightheadedness makes me stagger. I have to walk out with a cane in order to keep from falling.’ (77 years, male)
Headache	‘It feels like somebody’s taking a hammer and hitting me upside the head.’ (39 years, male)
	‘It’s just a dull ache up on the top of my head, at the very top of my head.’ (66 years, male)
	‘You feel like there’s Indians, and drummers, and anybody else in your head. If somebody asks me a question, I very slowly move my head because it hurts down into my neck. I mean, my neck feels sore.’ (68 years, female)
Nausea	‘I get a stomachache; it’s one of the things with dialysis.’ (67 years, female)
	‘[Dialysis will] make your stomach feel like you got butterflies in it… you know, my stomach problems can last till the next day if I’m really over my dry weight.’ (65 years, male)
	‘My stomach will be bubbly.’ (53 years, female)
Numbness or tingling	‘[Tingling] feels like—you know how a bug will kind of—you feel a bug flying on you? That tingle? It’s that kind of tingle.’ (64 years, female)
	‘I experience tingling in my feet and the lower part of my legs. Also in my hands… The right hand if it gets cold, it’s on. I mean I have to literally stick my hand under here, under my bust line, or go run my hand under some warm water to get the sensation to go.’ (59 years, female)
Shortness of breath	‘Feels like somebody’s sitting on my chest, I can’t breathe.’ (56 years, female)
	‘It feels terrible because sometimes I'll be gasping for breath, and it's hard for me to catch my breath. I get upset about it. I start crying because I can't breathe. It's like my own lungs is shutting down, and I just can't get the breath that I need.’ (49 years, female)
	‘I just kind of panic when I can’t get a deep breath. It’s like I feel like I’m going to smother.’ (76 years, female)
Itching	‘[Itching] is the most uncomfortable feeling in the world, because you can’t move around. You can’t scratch or nothing else. You’ve got to wait on the girls to come… You’ve got to take [fluid] off so, you’ve got to deal with it… after and during the session and stuff.’ (55 years, male)
	‘Oh gosh, I itch… I just have to sit there and scratch my head, and it’s like you want to put your back up against the wall and just itch, you know? Like a bear against a trunk of a tree, you know?’ (67 years, female)
	‘Terrible, terrible itching… it was really relentless at one time. I had open sores on my skin. It felt better to bleed. It would itch so much I would scratch until I bled, and even that felt better, just the bleeding, just to get the sensation of itching off of me.’ (59 years, female)
Heart palpitations	‘[Heart palpitations] could be a killer in more ways than one. Sometimes I’ve gotten chest pains and my pulse goes way up.’ (67 years, female)
	‘My heart feels like it’s going to jump out of my body and my body is saying calm down, calm down. (76 years, female)
	‘I’m like oh my god, am I having a heart attack? What’s going on? It’s scary. The fluttering of the chest is scary.’ (34 years, female)

^aQuotations are from patient participants.