Box 1.
Quotations from patients with CKD related to priorities for living well
| “I don’t want to think about dying from my disease. I want to be able to live well with my disease.”—Patient with CKD |
| “Life participation is most important because without it, you can’t do anything.” —Child with CKD |
| “Maybe it’s as simple as asking patients whether, how well they are able to participate in the life that they want to lead because it’s going to be different for different people”—Kidney transplant recipient |
| “Everyone has to face death, what I would like to have is a good quality of life rather than to face death.”—Kidney transplant recipient |
| “So, it doesn't actually really matter what the numbers say, and some of my numbers should have suggested that I should be feeling a lot worse than what I actually was, it's about how much I feel I can do and participate in my life and feel normal.” Patient with CKD |
| “I’m still living. I get out of bed, and I’m still living and still breathing. As long as I can do that, I’m going to carry on and be positive because life is short.”—Patient with CKD |
| “I put life participation because I know that looking from the outside, I know [his kidney disease] stops [him] from thinking bigger...Although that’s really big, there’s this life that has to happen at the same time.”—Family member |
| “Amazed at comments from professional(sic) about travel, free time, etc. they seem to think the mechanics of dialysis far more important. Dialysis is a treatment which keeps us alive to live a life, not just to wait for death.—Patient receiving dialysis |
| “I prefer to be above ground, then below ground. So why not enjoy life whilst being above ground.” Adam Martin |
| “Over the years, I have learned to worry less, control my emotions, and not fear death. I keep my mind active. I follow the advice of the philosopher-emperor Marcus Aurelius to 'love the hand that fate (has dealt me) and play it as (my) own'. Living well with CKD means to live the best life I can in the time I have available….Living well with CKD is the same as living well.”—Tess Harris |
| “While CKD brings me some limitations, I can maximize the possibility to live well. I kept working when I was doing hemodialysis. After transplant, I could live: study, work, travel, marry, have children, and service the community.”—Maggie Ng |
*Personal communication; quotations are identified by name with permission