As a dialysis patient, there is much to learn and much to do. Over a period of three years, sitting in the treatment chair three times a week and talking with a number of talented and knowledgeable professionals, I have developed the following three laws as a way a patient can manage what needs to be done. It’s OK to copy this and distribute it to anyone who may find it helpful. G. Penders, August 1, 2008, Windsor, CA.
ONE-DO EVERYTHING YOU CAN TO MAKE DIALYSIS EFFECTIVE
Never miss a treatment. Your life depends on it.
Control your diet, fluid intake, and exercise levels, measured by your average weight gain between treatments. The more fluid that must be removed, the harder the process is on your body and the longer it takes to recover.
Take your meds every day, keeping track of what you take and when you take it. Write it down and keep it with you, updating the list as things change. I find it helpful to note what each medication is designed to do, as well, as I always know why I am taking something.
Always take your phosphorus binders, with every meal. Kidneys can handle phosphorus, but dialysis machines can’t. Keep one dose with you for those unexpected meals.
TWO - DO EVERYTHING YOU CAN TO MAKE THE STAFF’S JOB EASIER
Show up on time.
Don’t move your arm or disturb your access site while in treatment.
Avoid interruptions to your treatment, such as bathroom breaks. Plan ahead.
Pay attention to your treatment so you know what is normal for you regarding blood pressure, clotting, cramping, and anything relevant to your well-being while in the chair.
THREE - USE INFORMATION TO GUIDE BEHAVIOR
Review your blood test results carefully - your first task is to get all areas into the target ranges. Once there, you can try a little creative cheating to see if the effect is too strong. For example, I find I can use a little half and half in my tea every morning without raising my potassium levels. A small thing, but it makes a big difference in the quality of my life.
Ask for test results for Kt/V, which is the overall measure of the effectiveness of your dialysis treatment. Learn what value for this test is optimal for you - it is a score for the entire process, including your part, the skills of the staff, and the efficency of the machine and its parts. Among other things, the test controls how many days a week and how many hours per treament you need.
If you are diabetic, record your A1C score and manage your blood sugars to achieve the best possible result. The A1C is an average blood sugar level over a period of three months and is the best measure of your control. Ask your doctor for a target range and work to reach it.
Ask questions - the more you know and understand, the better. Remember, it’s your life that is at stake.
(Note from Kim: I would like to thank Mr. Penders for this wonderful and thoughtful post. I hope this helps anyone out there with questions. He is a wonderful patient that is very knowledgeable and proactive in his care for this disease, proof that one can live well with Kidney Disease. I also just wanted to add that his consent was given for me to post his THREE LAWS, thanks again!)
Can anyone help me. My husband has had septiciama and septic shock his kidneys have gone into failure and when he was first put on the kidney dialysis machine it worked for 72 hrs some 2 wks later everytime they put him on it it only lasts 1-2 hrs. At first they thought it was the lipids in is tpn feed but that has been changed for a lipid free feed and the problem is still occurring. All the nurses and doctors say they have never experienced this in a patient and we are at are wits end to get the machine to work for longer. Any suggestions?