Quality of life can mean a lot of things. In people on dialysis, Medicare requires clinics to measure health-related quality of life (HRQOL) at least once a year. HRQOL means how YOU feel about your mental health, physical health, and how much of a burden kidney disese is for you. It turns out that your thoughts about these things can predict whether you will be in the hospital--and even how long you may live. The better you feel about your HRQOL, the better you may do.
So, now that we know what we mean by "quality of life," how can you improve yours? Here are some thoughts:
-- Identiy what is bringing down your quality of life. Do you have pain? Fatigue? Other symptoms that bother you, like restless legs or itching? Is your sleep a problem? Do you have money worries? For each problem, work with your care team to set a goal. Perhaps you need a referral to a pain clinic, for example. Your doctor could help you with that. If you want to keep your job, your social worker is a resource for you. Break your goal into smaller steps and set a timeline to meet them. Here is a link to a goal-setting worksheet: http://lifeoptions.org/catalog/pdfs/worksheets/Goalsheet.pdf
-- If you are on dialysis, the type of treatment you are doing can affect your quality of life. In the US, about 92% of people on dialysis go to a clinic and get 3 treatments per week, each lasting 3-4 hours. (We call this "standard in-center hemodialysis). That means 4 days a week (and 2 in a row) with no blood cleaning at all. Many people who do standard hemodialysis (HD) feel tired and washed out for up to 7 hours after each treatment. It can be hard to keep a job, travel, or even exercise, and there are strict diet and fluid limits--that other treatments don't have. Think about other options. If you want a transplant, talk with your doctor and be sure you are on the list if you qualify (getting on the transplant list is not automatic). Learn about other types of dialysis that you can do at home or in the clinic. Getting more dialysis feels more like having healthy kidneys, and can improve your qualtiy of life. Here are some places to learn more about home dialysis:
Home Dialysis Central - learn about peritoneal dialsyis (PD) and home HD. Read patient stories, talk to other patients & experts, and much more: www.homedialysis.org.
Let's Talk About Dialysis Options - watch a 3-minute movie to learn more. http://lifeoptions.org/letstalk/mov2eng/index.html
Help, I Need Dialysis! - this book covers ALL of the types of dialysis and what each one might mean for how you feel from day to day, what you can eat & drink, meds you'd need to take, your sleep and energy levels, sexuality & fertility, work, travel, and even hospital risk and survival. http://www.lifeoptions.org/help_book