Table 3.

Illustrative quotations of patient perspectives on hemodialysis-related symptoms

Symptom and Quotationsa
Top focus group–prioritized physical symptoms
 Insomnia (22 of 32 participants; 67%)
  “I may sleep for an hour, and then, when I am awake, I am awake. Like the night before last, I was up all night long. And then last night, I slept for about 2 h, and that was it, you know. And I don’t know if that is—because I didn’t do that before. So I don’t know if that is part of the dialysis or what it is, but it is there.” (Tucson participant)
 Fatigue (20 of 32 participants; 63%)
  “There’s days where I come in like two to three kilos heavier and sometimes where I go a little bit off track and come in like around four, four and a half … [Fatigue] is just like, imagine working 12 h and then having to go home and do all the house stuff.” (Tucson participant)
  “I prefer to have showers more often than I do, but sometimes, I’m too fatigued to get up and go down there.” (Seattle participant)
 Muscle cramping (18 of 32 participants; 56%)
  “I used to get cramps, like what people call Charlie horses, every once in a blue moon. But like I said, on dialysis, I’m catching cramps where I never thought you could get cramps; in my eyelids and my throat. Say, in my ribs, right here. I can catch ’em anywhere and I never got ’em before, and I used to play sports.” (Seattle participant)
  “Cramps, leg cramps. That is the most important to me, because I always cry when I get cramps.” (Tucson participant)
 Nausea or vomiting (14 of 32 participants; 47%)
  “I was walking to the buses, and I puked in the bushes. People think I’m a drunk.” (Seattle participant)
  “The nausea thing for me; I have some stomach issues going on which kind of like, that is 24-7, but when I walk into those doors, the nausea kicks up. I think that has to do with my anxiety. So it’s like every run, I would say, so 4 d out of the week for me.” (Tucson participant)
 Body aches (20 of 32 participants; 44%)
  “[Body aches] hinder our day to day lifestyle, because we have to live with this pain or discomfort.” (Tucson participant)
  “I have body aches … especially my arm.” (Tucson participant)
 Vascular access–related discomfort (11 of 32 participants; 34%)
  “Well, if you have steal syndrome, like sometimes, if I need to write and I got it, I can’t write. So that is how it affects my daily life.” (Tucson participant)
  “Feel bad because of my fistula. After they poke you and then they say we got to move it again. Oh, shoot.” (Tucson participant)
  “I have two fistulas in my hand, and certain movement that I do I feel like [a] cold shot through my arm. If I’m holding a bag or if I’m holding something, if I move my finger a certain way, I can dang near drop the bag if I don’t have this hand ready. And muscles, like the muscles in my arm, get sore after a while.” (Seattle participant)
 Blurry vision (six of 32 participants; 19%)
  “I know for me with the blurred vision, I go to a dark room … and just sit there, and I may sit there 2 h. And she comes in, and she’s like that’s depressing. No, it’s not. I’m trying to get my eyes focused, because when my eyes are blurry, I start to get headaches, and then, I just go down from there.” (Carrboro participant)
Top focus group–prioritized mood symptoms
 Anxiety (16 of 32 participants; 50%)
  “Anxiety—I am always anxious.” (Tucson participant)
  “I have anxiety with the needle. I mean, I’m an 18-yr veteran, and every day is still a new day; it’s just like the first day with that needle. I can work all day long and not wear myself out, but I’ll wear myself out just when they put the needle … and it doesn’t even hurt. I mean, sometimes it does, but they numb it all up and stuff, but I still go through the changes as if I was going to get kicked upside the head.” (Seattle participant)
 Depressed mood (14 of 32 participants; 44%)
  “[Depression] happens all the time; I go home and start thinking about what I have to go through. You see the people [patients on dialysis] and then find out that they died, and it is just hard. It is depressing to be dependent on a machine and have to go through this over and over again. I move past it, but it happens all the time.” (Tucson participant)
  “People get tired and worry; then they get depressed. They stop dialyzing and die. That needs to be looked at real hard.” (Seattle participant)
 Frustration (nine of 32 participants; 28%)
  “I mean the cramps, being tired, blurred vision—that happens because of the actual treatment. So that happens instantly. With me, it does. I mean the other stuff, like the frustration and what not, that comes after dialysis and having to deal with the technician. That’s something totally different.” (Carrboro participant)
 Irritability (nine of 32 participants; 28%)
  “Conversating [sic] with everybody, you really don’t want to. You don’t want to be around anybody. You just want to be by yourself.” (Carrboro participant)
  “Sometimes you get in a bad mood—so you know—don’t talk to me.” (Tucson participant)
  “Sometimes noise, loud noises is irritating. It irritates you real bad.” (Carrboro participant)
 Worry (six of 32 participants; 19%)
  “[Worry] all the time.” (Carrboro participant)
  “Well, people get to worrying, and they get tired, and they get depressed, and then they quit dialyzing and die. I’ve seen a number of them do that. So that needs to be looked at real hard.” (Seattle participant)
  • a Quotations are from focus group participants.