Give patients a voice

Kevin Fowler, a 60-year-old from St. Louis, United States, has dedicated his life to kidney health advocacy and innovation in the field of kidney transplantation after being diagnosed with autosomal dominant polycystic kidney disease, a genetic kidney disease that has run in his family for generations.

What was your diagnosis or your experience with kidney disease, and can you briefly describe your experience or the treatment you have received?

I come from a family that has suffered from Autosomal Dominant Polycystic Kidney Disease (ADPKD) for several generations.  My maternal grandfather, my mom, and both of her sisters had ADPKD.  They all died prematurely and were not able to maximize their participation in life.  Growing up in this environment, I was deeply impacted emotionally.  I lived in fear that I would follow the same journey.

In December of 2000, I started having back pain.  Initially, I thought the pain was attributable to some firewood that I had recently picked up.  At this point in life, I was married for five years with a three-year-old daughter and an 8-month-old son.  For the sake of our family, I knew I needed to determine if I had ADPKD. 

I contacted my primary care physician and requested an ultrasound test.  This test would determine if I had inherited ADPKD.  My doctor conducted the ultrasound test and delivered devastating news to me.  He informed me that I would experience kidney failure in 3-5 years.  Previously, this same doctor had told me that my kidney function was normal and that there was no need to be seen by a nephrologist.  My doctor offered to make a nephrology referral. I declined his offer due to his unsatisfactory treatment of my family history of ADPKD. I made the decision to find my own nephrologist, and this decision had a profound impact on my life. My nephrologist advocated that I have a pre-emptive kidney transplant.  This is the gold standard treatment for End-Stage Kidney Disease

What was your level of education about kidney disease prior to your diagnosis/ involvement with KD and how has it involved since then?

Prior to my diagnosis of ADPKD, I kept my head buried in the sand about ADPKD.  I was too scared by seeing how my mother suffered in incenter hemodialysis.  I thought that if I inherited ADPKD, I would face the same fate as her. 
My kidney transplant was a very powerful and positive experience.  So much so, that I changed careers after my kidney transplant.  I went to work for a pharma company in transplantation, and in 2016 I formed my consulting business, “The Voice of the Patient”.

What or who did you find the most useful (resources, methods, sources, supporters) on your journey of continued kidney education?

First and foremost, it has been my kidney transplant nephrologist. I subscribe to several nephrology journals including CJASN and Kidney International.  I love to stay up to date with current research.

Are you involved in raising awareness about kidney disease among your family, friends, or the general public? Explain why or why not.

I serve as a volunteer for several organizations in kidney disease. There are two that stand out. I am on the Board of Directors for the Kidney Health Initiative (KHI). KHI is a partnership that was formed in 2012 between the American Society of Nephrology and the US Food and Drug Administration. This collaboration was created due to the lack of innovation in kidney diseases. KHI truly values the patient voice and treats people like me as authentic stakeholders. The other organization is the Global Renal Exercise Group (GREX). GREX is a global organization that is focused on improving renal rehabilitation across the spectrum of kidney diseases. It is an unfortunate fact that people living with ESKD are not maximizing their participation in life. GREX is trying to change the current state.

In a few words, what would you say to people who are not familiar with kidney disease to raise awareness about kidney health and how to care for their kidneys?

I have one request for this audience. Once a year every person should check their kidney health. This can be done by having your primary care physician order a set of kidney tests to evaluate your kidney health. If people would take this one action, they are advancing the movement of kidney health.