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Table 4 Representative responses to the second open-ended questiona

From: Life and expectations post-kidney transplant: a qualitative analysis of patient responses

Patient Responses by Theme
Kidney-related health issues
 “concerned about kidney failure”
 “Rejection or failure of the transplant.”
 “Possible kidney rejection”
 “One day I know my transplant will fail”
 “fear of future unknown, how long will my kidney last rejection”
 “How long will kidney last”
 “How long will transplanted kidney last and what will happen to health then.”
 “Having to go on dialysis once this kidney loses function”
 “Never want dialysis again”
 “That I will be able to function and feel good when I am 20+ years older. Also, that I will be able to receive another transplant when needed.”
Comorbidities and quality of life
 “Blood Pressure & Diabetes”
 “That my Lupus will flare up and cause me to decline or kill my kidney.”
 “Feet pain due to neuropathy”
 “Cancer & Heart Disease”
 “Skin cancer due to transplant”
 “Multiple skin cancers”
 “That I’m going to die with cancer in my stomach”
 “repeat UTIs”
 “Heart disease - wish I had more energy.”
 “pain, numbness, balance, and coldness”
 “Function on my own and continue to be healthy”
 “stay healthy”
 “continue to live an active high quality life”
 “to be able to do the things I did before. Do stuff with my grandchildren and friends. Hang out laundry outside, go where I want to go”
 “Staying healthy and not being a burden to others. Being able to do what I want without pain.”
 “diabetes, fatigue, not being able to work-I never know when I will go back in the hospital (frustrating)”
Quality and cost of healthcare
 “How much all of it will cost?!”
 “the cost”
 “Insurance, insurance, insurance. Extremely important that I get excellent insurance to cover all my meds to the end of my life, which will be over 100 years young.”
 “Rejection of insurance”
 “Losing my health insurance.”
 “Insurance and its possible disruption to the best healthcare.”
 “I just want the future level of care to continue as it is at present”
 “My concerns are the cost of health care, what quality of health care will be provided in the future, what will my options be choosing concerning the health care, how will my health care be different in 10 to 20 years”
Family and support systems
 “I do not wish to become a burden on my family”
 “My children are grown now (22 yrs. & 20 yrs). It has been 7 yrs. since my transplant and I’m sure they would like to move out & live a normal life but feel quite guilty trying to help take care of me & help with all the bills.”
 “I know my transplanted kidney will not last forever. So I’m most concerned about getting sick again and going through dialysis and another surgery and the impacts it will have on my family now that I have a child.”
 “Being taken care of”
Lifestyle changes including less energy
 “Being mobile and able to take care of myself.”
 “Getting to walk again.”
 “Heart disease - wish I had more energy.”
 “How will my finances be managed in the future if my transplant kidney fails and I cannot work as [a] mechanic?”
 “I worry that I will be able to work until I am at retirement age”
 “I hope not to have issues in the future. My schooling and career are important for me to finish/figure out.”
  1. aThe second question was: “what concerns you most about your healthcare and future quality of life?” Responses have been lightly edited to correct spelling errors