Education is the most empowering force available to control your disease

As Richard Knight went through his journey as a kidney patient, dialysis patient and kidney transplant recipient, he came to understand the importance of learning about his disease and educating others so that they don’t experience the same suffering as he did. Today, he serves as president of the American Association of Kidney Patients, which is the largest independent patient-led kidney group in the United States. 

What was your diagnosis, and can you briefly describe the treatment you have received?

I was under the care of a Primary Care Physician who was treating me for high blood pressure (hypertension). Unfortunately, my hypertension was not adequately addressed and after several years, I visited a Urologist to have my prostate checked.  He indicated that my prostate was fine, but my kidneys were failing, hence I crashed into dialysis. 

What have been the most challenging aspects of being diagnosed and living with kidney disease?

I stayed in the hospital until in-center hemodialysis was located, and I was transferred there. I was not familiar with home dialysis, and there was no question of home dialysis. It happened in 2004, so the different modality options were not discussed as they are today. Living with kidney disease is a challenge, but I was determined to make the most of my situation. I was in my fifties when I started dialysis.  I was mentored by a friend who spent 30 years on dialysis.  He helped me understand the importance of controlling my situation and learning everything I could about how my body reacts to the treatment.  I am an educator, and I believed that the key to my well-being was to educate myself on everything to do with the kidneys. 

 How do/did you manage or cope with these challenges?

During my time on dialysis, I learned what my body could tolerate. My Nephrologists told me that I was in excellent health, except for my kidneys. I was an entrepreneur and ran a business, which I continued to operate.  I served as President of a Boys and Girls Club, where I coached my son and his soccer team.  I also served on the BOD [Editor’s note: Board of Directors] of my son’s school and was active with a Regional Chamber of Commerce.  To be clear, that is how I coped with kidney disease by continuing to be engaged.  

My mindset was as important as my physical health. 
I remained positive and focused on what I could do and not on what I could not do.  The concept of hope is missing for many dialysis patients.  I refused to accept that I would be on dialysis for the foreseeable future.

What are the most important learnings in your journey with kidney disease?

The most critical learning during this period was becoming a student of the disease and how it affected me. For example, fluid control played an important role in how I felt. I made sure that too much fluid was not extracted during dialysis, which meant I had to monitor my fluid intake very carefully, which I did. I also learned that I had to leave the dialysis center to get information about a transplant. It seemed that their goal was to keep me on dialysis, so if I wanted a transplant, I had to make it happen – which I did.  I learned that a living donor would be best for me, so I developed a strategy to search for a living donor. I decided not to stay on dialysis.

What do you think are the more important things that can help patients to live well with kidney disease?

Patients grounded in religion and a positive attitude are in a better position to learn and become educated about kidney disease. Education is the key to living well with kidney disease.  Patients must be their advocates.

What sorts of things would you suggest helping patients become better empowered and be in more control of their health/life?

Education is the most empowering force available. I am living a healthy lifestyle requires knowledge about what to eat and what not to eat, how to prepare foods properly, and how to read food labels. Knowledge about exercising is essential. Walking is a good option.  If one goes to dialysis and goes home to rest and wait around for the next dialysis session, depression will surely set in.  Depression is very serious among dialysis patients but rarely addressed.

What are your hopes and fears for the future concerning your disease and your life in general? Are you hopeful that you will be okay?

I have a great life. I received a transplant from a living donor in 2006. I am a patient advocate so that future patients don’t have to relive my experiences. I advocate for innovation, home dialysis, and increased transplantation, especially for African Americans.

What is something you wish people knew about living with kidney disease?

Living with kidney disease is what you do. The mind plays an important role in how you perceive your situation. Patients are not victims and should not act as such.  Of course, living with kidney disease depends on other comorbidities. Educating yourself and focusing on the positive in a sea of negativity makes all the difference in the world.

How did the recent COVID-pandemic change your experience with kidney disease? 

COVID-19 has a significant impact on kidney patients especially minorities, older patients, and those who are immunosuppressed.  Acknowledging this is important, and following the safety guidelines are critical to your health.  My advice is this – stop listening to the news.  COVID-19 is politicized, and much of the information discussed on the news – IS NOT BASED ON SCIENCE.  Patients do not need to live in fear.  Follow the safety protocols and live your life.  I’m older, so if they open up my county and state, I will continue to stay in and venture out when necessary.  But living in fear is stressful and may ultimately cause more harm than the pandemic.