Skip to main content

Table 1 Patient and family member quotes

From: Patients’ and family members’ perspectives on arrhythmias and sudden death in dialysis: the HeartLink focus groups pilot study

Theme

ESKD Patient Quotes

Family Member Quotes

Knowledge about CVD

“…they don’t actually tell you exactly what dialysis is and how it really affects your heart.”

“When they first tell me I have to go to the heart doctor, I automatically was, like, what? What happened?”

“Blood pressure also brought me in…because that took me to the stroke…I had a stroke, and I stood there for three days…I didn’t realize it. I had lost three days, and my pressure was 290 over 190.”

“I was 280 and I went to the doctors and he said, you got diabetes, high blood pressure and it was high cholesterol…I made a joke out of it…I still do whatever I want to do…They say, don’t eat this, don’t eat that. The same exact thing I did before I got on dialysis, I do right now…I drink a six pack of coca cola a day…I don’t feel no different. When my doctor tell me I had to go on dialysis and they was telling me all the symptoms, I never had them symptoms.”

“For a dialysis patient, to be honest, all you think about is the kidney. That’s it. You don’t think about the heart, but then I started to hear on TV a lot of people died of heart attack while on the machines, a lot of dialysis patients.”

“[He] has been on dialysis for a while and…just had a big scare two weeks ago…He said, Ma, I don’t know what it was, but I felt like I was pressing myself to walk, pressing myself to walk…it happened again, and when he came to dialysis, the doctor came to him and said [your] potassium level was dangerously high…your heart could have stopped.

Knowledge about arrhythmias

“I never felt it happen…my heart would go from like 80 beats a minute up to over 130 for about 15 seconds and drop back down. That’s the arrhythmia that they discovered, but I didn’t even know I had it.”

“I have to tell you how I discovered that I had this arrhythmia… My heart rate was 138…then the doctor came in and said, you got this arrhythmia going on.”

“So I don’t have heart disease, but I have A-Fib…I had two strokes, so I…have a…10 percent chance of having another one.”

“Is arrhythmia and A-Fib two different things?”

“No.” (referring to awareness of arrhythmias)

Family member and caregiver involvement

“…my girl and my sister, basically they take care of all that…when my doctor talking, my girl ask questions and all that.”

“I was saying that they need a pamphlet. Yeah, give them one also.”

“Every step of the way. I want to be there at the consultation. I want to be there…like his backup.”

“I would say…dialysis patients tend to hide a lot of things that they don’t want you to know…[he] never discussed any of this with us until he got that scare.”

Preferences regarding source of education

“I don’t think the dialysis staff would know.”

“Half of [the dialysis staff] don’t know.”

“Of course we’re going to have questions, and if they can’t answer the questions, what are we doing?”

“…only the doctor can answer some questions.”

“I think the doctor should be the one…to bring it up.”

Impressions about ICMs

“what if it were to malfunction? What would it do to me?”

“What is the side effects, actually?”

“…when I look at myself, would I be able to see a big knot there?”

“…would it leave a scar? NO more battle scars.”

“How long would the procedure take?”

“I’m sure [the monitor] might complicate the catheter.”

“I also think that there are a lot of people who are on dialysis who have major, major heart problems who would have a problem with this procedure, even though it only takes a minute…that’s the reason I couldn’t have some stuff done on me is because of my heart problems. The doctor wouldn’t take the chance.”

“It’s a tracking device. It’s for a government, if you don’t pay your bills, they shock your heart. They testing it on us, first.”

“If you’re going through a medical detector, would that alarm there, or if you’re on a plane, would the air pressure affect it there?”

“What about swimming and showering?”

“Suppose, [the] cardiologist starts to get bad signs from this thing…Would he want to call me in…and discuss what’s going on here?”

“Will it save your life? Let’s say I’m getting ready to have a heart attack in 15 minutes…”

“…how long it going to take for them to heal from the procedure?”

“Infection.”

“Can he go through the airport with it?”

“I know the doctors have the information, but is there going to be like a website for the patients to go and track their own information?”

Impressions about educational materials

“If I was interested in participating, this would be helpful. There is a number, there’s who is conducting the survey, what the survey is pertaining to, how long, everything. It’s pretty, it scratches the surface, which is what I would need to want to dial this number.”

“It’s clear…it’s not too medical term. It’s easy to for anybody. A child could read this.”

“It’s missing one thing for me? Pros and cons.”

“It should say have your questions ready, you know?”

“I think one of the things I would put, the main thing, speak to your cardiologist or nephrologist and understand how and why this might be something for you.”

“I think if you put it up in dialysis sites and stuff like that, it would catch my eye right off.”

“It gets straight to the point.”

“It’s not something that we would just brush past.”