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Attention New Patients
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Attention New Patients

By Gil

Dear new dialysis patient,

I’ve been on dialysis for 15 years. I make my living by writing software for controlling machine tools, and began writing my current software after being on dialysis for 4 years.

Starting dialysis can be frightening if you don’t know what to expect. Here are some ideas that may help you adjust to this new experience. Since I’m on hemodialysis, some of the tips below are specific to that kind of treatment, but other tips can be helpful no matter what treatment you use. Remember, it’s crucial to take charge of your own healthcare and get the information and care you need.

Good luck!

  • Gil

20 Tips for New Dialysis Patients

  1. It’s not the end of the world. While you have to change your lifestyle, you can still enjoy life.
  2. If your job is physical, you probably felt weak long ago. You’ll feel better now.
  3. If you do intellectual work, your brain is not dead yet—nor is mine, after 15 years on dialysis.
  4. Learn everything you can about how the kidney functions, your disease, and the dialysis machine.
  5. After a few weeks, learn what all the displays and warning lights on the machine are.
  6. Plan what you want to do to pass the time when you’re on the machine. Have more than one option.
  7. Buy your own thermometer instead of using the one in the dialysis unit.
  8. Ask questions. What is your blood pressure? What are your lab values and what do they mean?
  9. Learn the names of all of your medications—don’t call them the Blue One or the like.
  10. Check and confirm every medication that is given to you. Find out the purpose and the proper dose. Better safe than sorry!
  11. Get used to the metric system. Most hospitals use kilograms for weight and Celsius (C) degrees for temperature. You’ll feel better saying your weight is 90 kilograms instead of 200 lbs.
  12. Have a good scale at home; I recommend digital. Maintain your weight as directed. You may be able to get away with drinking an extra cup of fluid once in a while, but if you’re not careful, you’ll be sorry.
  13. Learn what foods are good or bad for you. You can eat almost anything in small quantities. At first, you may be afraid to eat many types of foods. After a while you’ll find your own balance.
  14. When you have some experience, use the results of the monthly blood test to experiment CAREFULLY with variations in your diet. Write down what you eat between your last dialysis treatment and the monthly blood test. Discuss the results with your doctor or dietitian. Keep a record of the results.
  15. Get a cell phone. You’ll feel less lonely, even if you don’t use it.
  16. Be nice and understanding to the staff. Then they’re more likely to treat you the same way.
  17. Consider other treatment options, including a transplant. Learn about the pros and cons before making a decision.
  18. Keep an eye on everything. You can care for yourself better than any doctor or nurse.
  19. Never miss a treatment. This is your life—nothing in the world is more important.
  20. If you don’t have other health problems, you may die of old age, so plan for a long life: go to school, get a job, volunteer, or get involved in some other productive activity.

Permission received to post the following information:

Name: Gil
Cause of renal failure: Polycystic kidney disease
Time on dialysis: 15 years
Treatments used: In-center hemodialysis
Work/other activities: Computer programming, research & development
Date: October 1999