The American Kidney Fund recently asked me to become an Amassador to help in lobbying efforts to our legislature. They also asked me to give advice to dialysis patients and their families. Here is an excerpt from that questionnaire that I think is helpful to most people who are going through regular treatments for most diseases such as cancer:
Getting through treatment requires mental gymnastics, in addition to taking the best care of your health possible. Keep your thoughts about yourself and your situation as positive as possible. Avoid ever thinking of yourself as “A Kidney Disease (or, dialysis) Patient.” You are a human being with life, love and purpose. Thinking in a “victim” mentality is destructive and untrue. Stay as engaged in life and your passions as possible. (My passions happen to be writing, and volunteer work for my church.) Focus on every positive thing you can think of, at all times. You don’t have the luxury of a negative thought. Your job now is to be an example of overcoming adversity with courage and conviction in order to give others hope and inspiration.
While in the actual dialysis session, practice relaxation and meditation techniques. Take a workshop or get coaching in this if you have to.
Newly diagnosed patients need to learn that dialysis is effective and is not a death sentence. It becomes a routine (though relatively small) part of your healthcare regimen and life that will keep you on track. Don’t let dialysis become the focus of your life. Even the diet is not as bad as you might think. You are capable of adjusting to all of this effectively, and finding meaning and purpose in your life.
It is vital to have support from a friend or family member in your life whether a dialysis patient or not; but now you really need a special kind of nonjudgemental empathic support from someone who cares enough to be educated about the needs of a dialysis patient, and will be a positive influence in your life, encouraging you.
Family members need to remain positive and encouraging to the kidney patient. Offer tangible as well as emotional support (be careful not to be patronizing or pitying). Patients sometimes feel a bit physically and/or cognitively weak immediately following treatment, and might need a ride home or help with preparing a meal. Most patients bounce back by the following day.
I have overcome numerous life-threatening conditions in my life, and have actually been pronounced dead at a very early age. I have overcome being brain-dead from a landslide, then unplugged from life-support so I could die. I went on to earn a Ph.D. in Clinical Psychology, just for spite. I have had a remarkable career in psychology and have worked with many people you see on television and in movies and in politics. I still counsel a few of them on a complimentary basis. Since receiving the diagnosis of kidney disease 5 years ago, which I initially was sure was a death sentence, I have become happier than I have ever been in my entire 66 years; despite now having a significantly reduced income from my days as a busy psychologist. My strength comes from the beautiful love and support of my friends, and family; as well as from a very deep faith in God (for very good reason). There have been many amazing miracles in my life, and there are more to come.
I hope this is helpful. Blessings to you.
Christopher Knippers, Ph.D. June 13, 2019