Table 3 Quotations from interviews with ESRD patients and their family members about their health care trajectories

Appearance of signs and symptoms

“What happened is that she never showed many signs. Later, she felt exhausted, drained, vomited frequently, was very tired …” (F6, female, 50).

“I never felt anything in particular, nothing, until I began to feel shivers, extreme cold in my feet, and the need to urinate; until suddenly I stopped urinating. I began to hallucinate from the toxicity. I became delirious.” (P21, male, 65).

“… it gave me a pain back here, in my waist. It was a severe pain, and I was lying here for a long time. Then, I began to swell and swell …” (P1, male, 60).

Interpretation of signs and symptoms

“… 1 day, my cheeks suddenly swelled up completely and my eyelids also began to swell, and my family said it was because I slept so much …” (P1, male, 60).

“He began to shudder. I thought it was a sore throat or a cold …” (F16, female, 65).

“… I still let a few months go by because I wasn’t sure what was happening to me. I thought it was depression or something like that. I didn’t treat it as you would a physical disease …” (P26, male, 51).

First contact with health services

“I was bringing [my daughter] to various doctors – like four – and they couldn’t figure it out, until we arrived at the emergency room and they told us there that she had Stage 4 chronic kidney failure. They had to give her dialysis because her disease was so far along …” (F14, female, 52).

“The first time I felt bad they took me to the doctor [mentions the name of a clinic next to a pharmacy] and the doctor just checked my eyes and head and prescribed me some medicine. The medicine didn’t help at all and the next day I felt worse and was vomiting. [My mom] took me back to the doctor and he looked at me again, without taking any tests or anything, and prescribed me some injections that did not help me. On the third day I couldn’t take it anymore and they took me to the emergency room …” (P27, female, 22).

“I went to the clinic, but they just gave me the runaround. They never sent me to a specialist. I fought hard to get here [the hospital]. We went to lots of hospitals, but they set up a lot of obstacles. There’s little hope that they will see you. We spent 3 months doing that.” (P21, male, 65).

Diagnosis

“… the doctor told me that it was gastritis, and prescribed some medicine for that, but later my pain was worse and didn’t go away.” (P11, female, 20).

“… my joints ached, my elbows and knees. My mom took me to the doctor, and they said it was my thyroid. Later, they took me to the doctor again, and again they said it was my thyroid …” (P27, female, 22).

“One [doctor] even told her she had cholera. A second doctor said she had appendicitis … but they couldn’t relieve her fever or pain … she remained the same. It kept getting worse, because then the swelling started. In addition, this doctor told her she had appendicitis. Another gave her a pregnancy test because of the possibility that she was pregnant, but it wasn’t that either …” (F14, female, 52).

Thoughts and feelings upon receiving diagnosis

“… it’s been terrible for me to feel like my life will be cut short. When they told me that I had chronic renal insufficiency I felt as if I could collapse, because I know that this disease is serious.” (P26, male, 51).

“[The diagnosis] made me so sad, because I thought, ‘You mean they’re going to put tubes in me?’ and I truly would have rather died. At first, I didn’t want anything; the only thing that I wanted was to die.” (P17, female, 32).

“… in truth, it didn’t even cross my mind that [chronic kidney disease] might be a serious problem. I thought, ‘it’s bad, but it’ll get better. It’ll be fine …’” (F13, female, 38).

Emergency medical attention

“The nephrologist [the doctor] started to ask if I knew that my husband could die. He told me that I had to pay for an emergency haemodialysis … because he was very swollen … they gave him the first thirty bags and after that he was hospitalized for about 2 weeks …” (F3, female, 57).

“I took him to the emergency room and that’s where they detected the Stage 4 chronic renal insufficiency, but by then it was urgent that he receive peritoneal dialysis because the disease was already well advanced. Then they made me sign some papers, and from there to here it’s been a long and difficult journey …” (F14, female, 52).

“… at the emergency room they told me that my toxins were very high and that I needed dialysis. They explained to me that they needed to put a rigid catheter in my stomach to detoxify my body, because if they didn’t, I would die, because I had so many toxins …” (P27, female, 22).

Health complications

“… it turns out [the peritoneal cavity] was infected, because they changed the catheter three times, and the third time it gave him peritonitis … after that, the catheter couldn’t save him …” (F14, female, 52).

“I arrived here [the Hospital] as a case that ‘could not be helped,’ because I arrived with peritonitis, I arrived swollen up, with the catheter incorrectly inserted. I couldn’t walk, I needed oxygen, I couldn’t move from the bed, I couldn’t turn from one side to another. I was hospitalized for 2 months.” (P27, female, 22).

“I arrived [to the Hospital] with 5% of my kidney working. I checked myself in, and after that I came every 2 weeks, but I got peritonitis and so I came to the emergency room …” (P23, male, 30).