Your First Year on Dialysis - Kidney Questions and Answers.
On dialysis(0-3 months)
My medical condition:
- How do my medications help my condition?
- What is EPO and how does it help my anemia?
- How can I protect my vascular access?
- How long will it take me to get used to my treatment?
- How does dialysis clean my blood?
- How does the dialysis machine protect my safety?
- What happens to me if I miss some dialysis?
- What will happen to me if the power goes out during dialysis?
- What should I do if the dialysis center is closed for an emergency?
- What supplies should I always keep on hand for emergencies?
- What is adequate dialysis and what does it have to do with time?
- Why are dialyzers reused?
- Who should I talk to if I want a kidney transplant?
- What can I do to make dialysis go smoothly?
My relationships with family and friends:
- Can my friends and family visit me during dialysis?
- Who can help me explain dialysis to my family and friends?
- Who can I talk to about changes in my body that upset me?
- Is there another patient I can talk to about what to expect?
My work/school/insurance:
- When will I feel well enough to work?
- Can dialysis be scheduled around my work/school hours?
- What happens to me if I can’t do the same job any more?
- How do I decide whether to apply for disability or not?
- Should I tell my employer about my kidney disease?
- Who can I talk to about my insurance or work/school questions?
My eating:
- When will I get my appetite back?
- What can we cook that everyone in my family can eat?
- Where can I find recipes/meal plans that are okay for me?
- How can I cope with the thirst or food cravings?
- How do I know how much sodium or potassium is in a food?
- How can I afford to buy the foods I’m supposed to eat?
- What can I do about constipation?
- Who can help me with questions about what to eat or drink?
My future:
- How long can people live on dialysis?
- What is likely to happen to my health as I get older?
- When will I start feeling like ‘myself’ again?
My feelings:
- How do I get over feeling like my body has let me down?
- How can I get used to the changes in how my body looks?
- What can I do if I feel less useful than before my kidneys failed?
- Do most people with kidney failure feel the way I do?
- Will I ever feel less ___________ than I do now?
- Will I ever feel more ___________ than I do now?
My responsibilities:
- What do I have to learn to help me stay as healthy as I can?
- What can I do to be sure I can keep doing my favorite things?
My lifestyle and everyday activities:
- Who can help me find food and a place to live?
- Why is exercise important for me?
- What kinds of exercise can I do safely?
- Where can I find a safe place to exercise?
- When will my life start to seem ‘normal’ again?
- What can I eat if I go to a restaurant or someone’s home?
- Who can teach me how to make travel plans?
- What can I do to sleep better than I do now?
My relationships with staff:
- What does the technician do for me?
- What does the nurse do for me?
- What does the social worker do for me?
- What does the dietitian do for me?
- What does the nephrologist do for me?
- Who is the best person to talk to about ___________?
Other:
On dialysis(4-12 months)
My medical condition:
- Why are there often changes to my medications?
- What is my hemoglobin and how does it affect the way I feel?
- If I take EPO and iron pills, do I still need intravenous iron?
- How do blood flow and time affect the amount of dialysis I get?
- How do I know if I am getting enough dialysis?
- What should I do if I believe my access has clotted?
- Will dialysis affect my nerves (the feeling in my hands & feet)?
- Do I still need regular immunizations or flu shots?
- Do I still need routine tests, like a PAP smear or prostate check?
- Should I use estrogen after menopause?
- Who do I talk to if I want to try a different treatment for ESRD?
- What is the phone number and address of the transplant center?
My relationships with family and friends:
- What can I do if my family and I disagree about my treatment plan?
- How can I understand and adjust to new roles in my family?
- How can renal disease affect my sexual function?
- How can I help my family and friends cope with my dialysis?
- How can I tell my family that I need to be more independent now?
My work/school/insurance:
- How can I avoid missing work or school?
- Where can I find help to get a job or go back to school?
- How can I get help to pay for school or work training?
- How can I find a place to volunteer?
- Who can help me with insurance, work, or school questions?
- Who can talk to my employer or school about dialysis?
- What should I do if my insurance coverage changes?
My eating:
- Where can I find recipes and menus to fit my meal plan?
- Where can I find more information about the foods I like to eat?
- What can I learn from my regular blood tests, and who can help me?
- Why does it matter when I take my phosphate binders?
- What does dialysis adequacy have to do with how I eat?
- What can I eat at restaurants and other people’s homes?
- Is it okay to skip meals when dialysis makes me very tired?
My future:
- How long can I live on dialysis?
- What do I need to know about other treatments for kidney failure?
- How can I keep up with the latest medical developments?
- What are the long-term effects of my medical condition?
- What are “advance directives” and do I need them?
My feelings:
- How do I deal with the fatigue and hopelessness I feel sometimes?
- What is depression and how do I get help for it?
- How can I ask for help and pay back people who help me?
- Will I ever stop having a lot of ups and downs in the way I feel?
- How can I talk to others about the feelings I have?
My responsibilities:
- What is my role in controlling my weight gain and blood pressure?
- What is my role in my monthly blood test results?
- What is my role in making and keeping medical appointments?
- What is my role in keeping up regular exercise?
- What do Ido if I disagree with some of my medical care?
My lifestyle and everyday activities:
- How can I change my life for the better?
- How can I enjoy spur-of-the-moment things?
- Can I still do activities like hiking/boating/working out in my gym?
- Can I still enjoy things I used to do alone (long walks, boating, etc.)?
My relationships with staff:
- What should I do if I don’t get along with some patients or staff?
- Do I have a choice about who takes care of me at dialysis?
- Can I get together outside dialysis with staff and/or other patients?
- Will I get advance notice of any changes at the dialysis center?
- How can I cope with changes in staff?
- What happens when other patients are in the hospital, or die?
- Do we celebrate birthdays, weddings, and holidays at the dialysis center?