If you’re new to dialysis or are nearing the start of treatment, here are some good points to consider from the ESRD Networks. I have added my thoughts beside each in parentheses. If there is a posting about the subject, I’ve also added links to those and other sites of interest.
1. Ask your doctor about all the treatment options that are available to you, such as transplant, hemodialysis, peritoneal dialysis (PD) and home dialysis.
2. Take an active role in your care by working with your health care team. When you don’t know something about your disease or your care, ask questions of your health care team. The more you know about your disease, the better you can take care of yourself and participate in your care.
3. Help your family to become very familiar with your disease so that they can be a support for you as you begin this journey. (My family helps me remember to take my binders at meals.)
4. Ask the dietitian to give you a renal diet, and learn what foods are good for you to eat and which you should not eat. (Put lists of good and bad foods on the fridge to remind you.)
5. Ask your nurse or technician to explain how your dialysis machine works and what it means when the alarms sound.
6. Learn how to care for your access because it is your lifeline. (Before each treatment, wash the site and keep it covered between treatments as much as possible. see www.dialysisarmbands.com for ideas.)
7. Understand your monthly labs. Ask what the numbers mean. (Pay particular attention to the Phosphorus and Potassium levels along with fluid control and dry weight levels.)
8. Find out the name of the Patient Representative in your facility and the Patient Advisory Committee member in your area. Learn what the Patient Advisory Committee does. (If there are none, consider signing up as one. See ESRDNetworks.org)
9. For your comfort, bring a pillow and a blanket to the facility to use while you are doing dialysis. (A yoga/exercise pad is also helpful to put on the chair under you. Available at your local sporting goods store.)
10. Stay active. Ask your social worker about vocational rehabilitation and opportunities for volunteering. (I make phone calls to home-bound people for my church while in treatment. Also, if your center has WiFi, consider getting a tablet computer if you can afford it. Updated: As Debbie commented below, get active on the social networks like MyDavita.com and Twitter. )
© 2012 DevonTexas
Portions reprinted from the http://www.ESRDNetworks.org website.
Good list. I would add following lots of people on social media sites and message boards. Knowledge is power.