Patient Perspectives: A Dialogue on Mental Health and Kidney Diseases

KN: How has kidney disease impacted your mental health?

Lee: As a two-time kidney transplant recipient, living with kidney disease has had a significant impact on my overall mental health. I was diagnosed with acute renal failure in 2007 after my first transplanted kidney went into rejection. After this diagnosis, I have lived with the fear of my second transplant rejecting and me having to undergo peritoneal dialysis for the third time in my life. It can be a challenging and stressful condition to manage along with everyday living arrangements such as school and work. Kidney disease often requires frequent medical appointments as well as dietary restrictions.

Goodrich: Having Dent, a rare kidney disease, has added something to my plate. I have to be mindful of my diet like few people I know. It is often uncomfortable for me to talk to people, such as event coordinators, about my dietary needs or to tell my friends that I cannot eat out at most restaurants because of the high salt content.

KN: What was your emotional experience during major transitions in your kidney disease (e.g., chronic kidney disease to dialysis, dialysis to transplant)?

Lee: I initially felt a deep sense of hopelessness when I was assigned to peritoneal dialysis for the second time. At the time that I was experiencing the symptoms of renal failure, I had no idea that my condition would lead to dialysis if it progressed. I had prior familiarity with dialysis but never really understood what it was that made me feel very frustrated when I was told that my kidney progression had reached its ending point. During my senior year in high school, my mental health was substantially impacted. Kidney disease caused me to feel depressed because of how my physical features changed. Additionally, the physical symptoms of kidney disease, such as fatigue, pain, and difficulty concentrating, have been a challenge that I continue to overcome in my life.

Goodrich: While I have been blessed to not require dialysis or a transplant yet, I have been increasingly anxious about my kidneys as time has gone on and as I have matured. I know that every bite of food I eat and every drop of water I drink have enormous impacts on the rest of my life. This sometimes makes me experience anxiety about what I eat. Another factor is that a transplant will require a kidney from my younger sister. I do not want her health to be possibly jeopardized because I did not take care of my condition. This has made me feel anxious and sometimes scared about what might happen in the future. Even through all of this, I know that whatever happens is up to God, and that has been the greatest help to my mental health.

KN: Do you feel comfortable raising concerns about your mental health with your nephrologist? Why or why not? What advice would you have for your clinicians to help you feel more comfortable talking about these concerns?

Lee: I have grown to become more comfortable raising concerns about my mental health with my nephrologist, but I often believe that I have to explore other personal care options such as a therapist to help guide me through how I feel with kidney disease. It is important for individuals with kidney disease to prioritize their mental well-being and seek outside support from support groups and counselors. Clinicians should begin with understanding the environments that patients come from to have a better understanding of their mental health issues and so that patients feel supported and cared for throughout their journey with kidney diseases.

Goodrich: My mental health in terms of my kidney disease is connected with what I know about the condition of my kidneys. When I have questions about my diet, medication, or a new phenomenon related to my condition, I feel comfortable asking my nephrologist about it. Sometimes, I felt guilty about telling my nephrologist about a new phenomenon, because I feel responsible for my health. Over time, I realized that the more I talked to him, the more confident I got with his care, and the more I understood my kidneys. Eventually, knowing more about how I can take care of my kidneys helped me have more peace and feel like I had more control over my condition. Only by maintaining this confident relationship with my nephrologist was I able to maintain this positive outlook.

My advice to other clinicians would be this: Build trust with your patients. If your patients are not comfortable in sharing concerns or asking questions that could change the status quo of their care, it will be harder to help them, and they will have more anxiety and a worse state of mind as the condition develops. This can be easily avoided if the patient knows that talking more freely to their clinician will help them—if not now, then in the future.