My First Chronic Kidney Disease Awareness Month
Last updated: September 2023
My first chronic kidney disease (CKD) awareness month has passed. Nothing brings the issue of CKD awareness home like hearing your new friend, the nephrologist, say you have CKD. Well, not exactly my new best friend, but sort of. I am 65 years old and have been worried about CKD since 1974, when I was first diagnosed with type 1 diabetes. I worried even more when my mother (a person with type 1 diabetes) lapsed into complete kidney failure and underwent dialysis for the last ten years of her life. But this is different because this is the year I was diagnosed with CKD stage 3a.
Should I do anything?
So how did I spend my first CKD awareness month? Did I ignore it like I did diabetes for many of my younger years? Did I join a national organization and look for a place to advocate and impact legislation? Or did I step back and count my new supplies and medications to be ready for the coming days, which may or may not get worse?
At first, I thought about redoubling my efforts in the rheumatology and diabetes communities to warn others of the impending outcome if they do not take those conditions seriously. I considered making myself the cautionary tale of 'take care of yourself,' or you will end up like Rick. There might have a book or at least a few good blog posts in that somewhere. The problem is that I have never considered myself a victim, and painting myself as poor Rick, is just not my style.
Doing nothing was an option
One thought I had was to do nothing. Let's face it, this condition has been around for hundreds of years, and CKD awareness month has been around since 2006. I did nothing then, so why should I do anything now? I mean, why break an unbroken record? It is not like I am in the acute phase of CKD. The nephrologist is doubtful I will lose total kidney function given that I am 65 and have been chugging along for nearly 50 years with type 1 diabetes, so maybe I should stay out of the fray? Sit on the sidelines and let others advocate for new treatments, better insurance coverage, or increased awareness. That seemed reasonable. At least, I could tell myself I acknowledged CKD month this year.
I thought about sending more nutritious foods to my local food pantry. That way, I would be working in a big way to combat type 2 diabetes and thus reduce the incidence of CKD. But that seems like a long way to get where I am going.
I started looking for a lapel pin to use when I attend arthritis or diabetes events. I always wear a pin for diabetes at arthritis events and arthritis when at diabetes events. I always wear other disease pins on my lapel because it usually causes someone to ask about it. Now I will get a CKD pin and add it to the rotation, prompting some cross advocacies.
I decided to advocate how I always do
No, I decided to advocate how I advocate best. That is by starting to write about my experiences and tell the story of how I came to have CKD and what I am experiencing now. That seems reasonable and probably the most productive thing I could do. That is what I do in the diabetes community. While I am more active in the arthritis community, I still mostly write. So that is where I decided to start in the CKD community.
Hopefully, by writing, I can help others and myself as well by thinking about my path and, at the same time, reporting my experiences moving forward. Yes, that seems like a manageable way to start.
Do you have chronic kidney disease without any symptoms?