Table 3 Exemplar Qualitative Quotes

Adapting to New Circumstances

Tackling Change

I’m pushing [for decreasing water bills], first with our town and then maybe as a stepping stone to all of the cities and towns and municipalities… I think I’ve got it to where my town of XXX is going to start backing me up. [P4]

If I eat too much of the wrong stuff, you realize it pretty quickly and you know you’re not going to feel right. But I mean, you just learn, you know, it’s your body. [P16]

I’ve never been a person who sleeps in one position all night, so that’s going to be a significant challenge for me when I get to the point where I am using a fistula. [P5]

Accepting Change

I think at the start, a lot of it was that I wasn’t working and I was sick and it was a lot to take in. So now, I know what’s going on and I have settled into my new routine… but, yeah, at first it was hard.[P6]

I pretty much accept things as they are. It’s life. And, as I’ve been told, I am not 50…There’s no sense crying over spilled milk. [P26]

I realize that I’m in a position where at least I have the opportunity to potentially receive a kidney transplant. I understand that lots of people aren’t in that position and that must really weigh on them….And I’m sure that would change my outlook if I knew I couldn’t get a transplant. [P15]

Adjusting Together

[My husband] had mentioned how helpless he felt in terms of being able to do anything to make my quality of life better and how frustrating it was for him that I never had energy to go out… He has commented since we started home dialysis that he feels that there is just way more that he can do to help. [P5]

My fiancée has to put up with a lot, taking care of me and being responsible for the cooking and my moods and everything. And not being able to travel together. She’d like it if we could travel together, and so would I. But it’s just not in the cards right now. [P18]

[My wife] feels she has to be here in the house all the time in

case something goes wrong… I’m trying to reassure her that she can [travel] and she doesn’t have to worry about me, because I’ll be fine. [P4]

Trading Off

I have more energy and a lot more drive, I think, since I switched from the hemo to the peritoneal. I think it’s mostly that I didn’t have to go to the hospital every second day. [P29]

Not going to the hospital… saves us money on things like parking and gas. So, that’s a positive point for me. The other one is that, you know, I get up in the morning and I’m already done with dialysis. I mean, not so much right now because I’m doing an extra bag in the middle of the day, but basically most days I’m done with it… So I think there are more positives with peritoneal dialysis compared to hemodialysis. [P8]

Apparently peritoneal dialysis doesn’t get rid of calciphylaxis. The only way you can get rid of it is on [peritoneal dialysis]. [P26]

Challenges of Chronicity

The Impact of Dialysis

I’d like to be able to drink, you know, instead of having to eat ice chips. I drink a couple of cups, 2 or 3 cups a day, but I’d like if it was more (coughs). And I’ve got a cold now. Probably because my immune system is so suppressed. [P18]

I had to get two catheters put in. The first one had to be removed… So, I had another month and a half where I couldn’t go to work and then in my industry… when the job comes up you’ve got to take it. There’s only so many jobs. [P19]

I play more games now. I play a lot of cards again. I play Bingo. The only problem is I cannot go to places overnight because of dialysis in the evening. [P9]

Living with a Complex Disease(s)

I’ve been sick for a year and a half now so I haven’t really broken a

sweat in a year and a half. I’ve lost a lot of my muscle in that time…. And my physical health has declined because of that. [P15]

I mean, it is all connected [diabetes and kidney disease]. Unfortunately, we just can’t treat one part of the body and expect the rest of the body to stay as it was, right? [P5]

My vision has actually gotten worse lately. I’m going for eye tests next week. And also, my feet are really, really sore. Now, the doctor has given me some pills to try to counteract that, but as the day goes on, my feet get really sore. [P4]

Planning with Uncertainty

It’s just that I’m not used to it and I wasn’t expecting the whole situation and all of a sudden, everything has fallen in my lap, and I’ve had no choice but to deal with it. [P8]

Some days are better than others. So, some days I can work all day long, whereas other days, a half a day is all I can do. [P6]

Sometimes I can do everything in my house but there’s times that I can’t. That’s why I have a caregiver. I easily get tired. [P11]