Diurnal and Daily Symptom Variation in Patients with ESKD

This study could not be timelier. We are in the age where health equity and quality of life are just as important as treatment itself. To apply quality measures, studies are needed to determine whether a condition exists. This study by Kallem et al.,1 although small, examines 160 patients' response to surveys at variable times, both before dialysis and afterward to understand the variability in symptoms of dialysis. This is a very important study because patients have complained of postdialysis symptoms for decades, but it has been difficult for members of the care team to understand and treat because most of the symptoms take place when patients are outside the clinical setting. Through this study, the intensity of physical, cognitive, and mood symptoms were measured at different times of the day, both on dialysis days and nondialysis days. A variety of races and ages were represented here. A conclusion was reached that patients demonstrated variation in symptoms and greater symptom burden on dialysis days as compared with nondialysis days. The most extreme differences took place in the early afternoon. This study gives validity that a condition does exist in many of the participants and will hopefully lead to further, more intense studies of postdialysis symptoms, and finally, some form of relief may be developed for the many patients on dialysis who suffer from these debilitating symptoms. As a person with ESKD, I have experienced in-center hemodialysis, peritoneal dialysis (PD), a kidney transplant, and home hemodialysis. I was diagnosed with ESKD in 1992, when I was 23 years old. My journey started on in-center hemodialysis, and like many of my fellow patients, I was miserable for the entire three-and-a-half years until I was introduced to PD. As I think back, I felt differently, and my quality of life was different with each modality. On in-center hemodialysis, I suffered, sometimes during the treatment, mostly afterward. Sometimes I started itching during the first half hour; I usually started to feel bad during the last hour of treatment, with leg cramping, sometimes vomiting, and always felling like I was hit by a train afterward on the way to work. I started out on the fourth shift, starting treatment at 6 pm and would finish at 10 pm and afterward I would take the train to work at the post office from 11:30 pm to 7 am Most nights, I spent the first 2 hours of my shift in the nurse's office, laying down sleeping to recover from treatment. Some nights, I would pass out on the train to be awakened at the last stop by the conductor. I just knew things would improve when the social worker advocated for me to have a morning shift spot so I could receive my treatment after work. Even with that, I had no time to spend with my 2-year-old daughter, and my marriage of 6 months was over. I finally gave in and filed for disability, somewhere around 25 years old. I moved out of my apartment and back home with my parents with a monthly income of $1200. Had I known beforehand that PD would be such a different experience, I would have never gone on disability. I spent the next 10 years on PD. I call that time when I got my wings back. I was able to participate in the normal life activities of a young mother with a school-aged child. I went on class trips; I went through all the tests for pretransplant evaluation and began my relationship with my ESKD Network as a patient advisory committee member. In 2003, I got the call and received my first kidney transplant. That transplant lasted 6 years. I was able to reinvent myself and start working at my ESKD Network as a community outreach coordinator and to continue my advocacy work. I have shared all this to give you a peek into the life of a patient with kidney disease on dialysis. I had every intention of working until retirement, but the postdialysis symptoms were so debilitating until I could not continue to work while going to dialysis treatments three times a week. As a patient advocate for over 33 years, I have spoken to countless patients about this topic; many have experienced similar lifestyle interruptions as I and seldom finding relief from their doctors. This study does not validate the severity of the symptoms or how severely the effect is on the patients' lives, but it starts the conversation that a condition does in fact exist. In May 2023, I cohosted the first scientific workshop with the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases, on Post Dialysis Fatigue Syndrome.2,3 During this workshop of 175 attendees, dozens of patients and representatives from the American Association of Kidney Patients worked together to help the kidney care community better understand the symptoms of dialysis. We spoke of how debilitating dialysis treatments can be and what an interruption it can be to quality of life. The goal of the workshop was to be a call to action; for people on dialysis to tell their stories about how difficult it can be to hold down a job, to participate in family and community activities, or to even concentrate on a book or a movie after dialysis. It was my hope and the hope of many of the patients that more studies will be performed to better understand the causes of these symptoms, and to discover therapeutics, for postdialysis syndrome. In conclusion, I was elated to see that this study took place and to see that although the pool was small, the patient voice was heard, and hopefully the beginning of addressing postdialysis symptoms has taken place. With the results of this small trial, revenue must be invested for larger trials, surveys, and studies to move the needle and find relief for patients on dialysis. I thank those who conducted the trial and those who submitted the article; I am encouraged to see science moving in a direction that is truly meaningful to patients now, in the present.