Dialysis, isolation, depression, anger. Each of these words has a separate meaning but they seem to go hand in hand with each other. For many people on dialysis, these words combine to form a "new normal" state brought on by living with kidney failure. I know this, because I live it.
I started this journey in January 2008 and I have seen, heard and shared a lot with other people living with kidney disease and on dialysis in the past eight years. Many people on dialysis, myself included, have many comorbidities. We must see multiple physicians and specialists, and they prescribe a myriad of drugs. Going to dialysis three times a week and constantly having to visit different doctors often brings on a flood of anxiety and feelings of depression. This disease has a way of taking over your life.
Having kidney failure changes a lot of things, and that can contribute to feelings of depression and isolation. One of the first things that can change quickly is your social life. Throughout my eight-year run on dialysis I have lost many friends who stopped coming to visit or just no longer wanted to get together. I could no longer eat the same foods or drink alcohol, and I had to limit my fluid intake. I could not travel on a whim anymore — it is hard to be spontaneous when you have to be attached to a machine for four hours, three times a week. Eventually these friends felt they could no longer hang out with me; others were just put off or freaked out by the entire process of dialysis and my physical changes.
I was not prepared for the physical changes this disease would wreak on my body. My skin became four shades darker, extremely dry and flaky, often peeling and itching. Every inch of my body itched and/or flaked from my scalp to my feet. My legs and feet would expand between treatments due to the fluids retained in my body. To this day, I break out in dry patches, or in pimples on my face and back. These changes are hard to look at in the mirror every day. They can make people on dialysis feel ugly and not want to be seen by others, increasing our isolation.
Many people on dialysis, myself included, experience extreme fatigue and a sense of confusion or forgetfulness. We nickname this "kidney brain" — you feel "fuzzy" or have problems remembering things or find yourself losing your place in thought. I have heard people say they feel this sense of fuzziness is often at its worst right after their dialysis treatments.
This is not an easy topic to write about but it is something that we need to bring into the open.
We need dialysis care teams to have this conversation with people on dialysis not once, not twice, but ongoing. I believe we need more collaboration between the mental health community and the kidney community so that caregivers can help identify people who are isolated or may be depressed. In an ideal world, dialysis centers would have a mental health professional — a psychologist, therapist or some form of counselor — on staff or at least affiliated with the center. Since people go to dialysis treatments so often, it would be convenient if there were a mental health professional available for them on-site.
I am doing my part to help people in my community reduce isolation by creating opportunities to meet others facing similar challenges for socialization, fun and recreation through a small nonprofit, For Kidney's Sake. I do not think the only time a person goes out of her house should be to go to the doctor's office or dialysis. I do not think a person on dialysis should be embarrassed by how he looks. I am convinced that the lives of people on dialysis can be improved dramatically by creating these kinds of connections.
This issue should become a national movement. If we talk about it, we can improve it. We can improve the lives of people on dialysis, one day at a time!