Be the captain of your own care

Derek Forfang is a kidney disease patient from the United States. He is also a thought leader and the chair of the USA KPAC (Kidney Patient Advisory Council of the ESRD Networks). He shares his experience facing kidney disease and his hopes to improve kidney disease patients’ lives.

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

My biopsy was inconclusive but believed to have diabetic kidney disease. I started with a pancreas transplant, which lasted for 15 months. A year after my first transplant, I underwent a kidney transplant, which lasted for three years. I then transitioned to PD for three years. I experienced PD failure, so on to in-center dialysis for nine years. I then went into a desensitization protocol project. I was lucky to receive my second kidney transplant, which I have had for a little over seven years now.

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

I would say the biggest challenge for me was a loss of self and my identification.

In the first few years of in-center HD, I felt that kidney disease was a disease of losses.
I lost my job; I lost my marriage and then lost my house. When meeting someone they usually ask what you do. Instead of answering with my job title, I answered dialysis. I had lost myself and my identity. I began to feel depressed.  

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

I reached out for help. I started meeting with a therapist and did not understand at the time, but I started repurposing myself. I began my life as a patient volunteer and advocate. I became more and more engaged over time. I feel looking back, helping others saved my life. It has been over ten years now, and I am involved in everything from new devices, like wearable dialysis devices to artificial implantable kidneys, to new drugs to slow or halt the progression of kidney disease. I am also involved in health care policy and work with several US government agencies.

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

Don’t sell yourself short. You can thrive with kidney disease and be hopeful better advances in technology are coming soon.

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

Being a true partner in your care. Be the Captain of your Care Team.

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

When talking with your providers, open the conversation up with what is most important to you. It could be your job or going to school. It also could be traveling or spending more time with your family, gardening, fishing for example. What’s most important to us should drive our care.

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 hope that we will stop kidney disease and make necessary changes in the culture of care, so patients currently on renal replacement therapies have better outcomes and live better lives. My fear is we will remain the same, and others will continue to suffer as I have. I feel I will continue to live my best life.

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

It’s hard. Dialysis and even a transplant are not a cure. Also, kidney disease can dramatically shorten your lifespan. 

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

I have been sheltering for the last seven months, only leaving the house for labs three times and one doctor appointment. So, it has made me isolated from friends, family, and probably the worst is not seeing my children and grandchildren who live in different States.