By Jim McFarlin, NKF Guest Blogger
I recently returned from a kidney patient convention, where I had dinner with an inspiration.
You know how it is at most conventions. The experts and keynote speakers are nice to hear, but the true value often comes from interaction with fellow attendees as you network and compare experiences. So it was for me.
At the annual awards banquet, I happened to sit next to a delightful woman whose perfectly coiffed hair was a luminous silver. She was a recently retired educator from Springfield, Ill.; let’s call her Patty. And as we exchanged pleasantries, Patty said something that absolutely floored me.
She calmly disclosed that even though she had been diagnosed with ESRD just eight weeks earlier, she felt compelled to scrape together the money for airfare, hotel and registration charges to attend the conference.
“I felt the need to learn as much about my condition as quickly as I could,” she explained, “and this looked like a good place to do that.”
Well, huzzah, Pat!
I told her how inspired I was by her proactive measures. Over the salad, however, we began comparing notes and conceded we both have seen the darker, flip side of the patient equation.
In only two months, Patty had noticed kidney patients who skipped their medications or didn’t take them altogether, failed to keep dialysis appointments or otherwise performed acts of medical defiance that could only compromise their treatment. So have I.
Since being diagnosed with Stage IV kidney failure in 2009, during visits with my nephrologists and dialysis nurses; through my membership in several kidney-centered organizations and support groups; in my tours of dialysis clinics to try and educate hemo patients about the wonders of peritoneal dialysis, I have encountered an astonishing number of people who seem to take their doctors’ orders as suggestions or treat dialysis sessions like trips to the supermarket: once a week, just to stock up.
Why? Why would anyone who knows they have a serious, potentially fatal illness disregard the instructions of a qualified medical professional? From my kidney travels I believe there are two main reasons, and they’re the same reasons that most of us avoid anything.
Fear. And ignorance.
After I was diagnosed, I couldn’t drive past a dialysis center without nearly breaking into tears. I was terrified. There’s something very scary about the realization that a vital body part is failing you, and in that mindset the torrent of information you receive can strike your ears like the voice of Charlie Brown’s teacher. If I don’t acknowledge it, maybe it will go away. What’s more, you can easily delude yourself into believing you’re not as sick as they’re telling you. After all, it doesn’t hurt, you reason. Shouldn’t it hurt? Why do I have to take all these pills, or go to dialysis?
Mostly because your life depends upon it.
You’re in a battle, and kidney disease is the enemy. You have to learn as much as you can about your foe. Read. Research. Ask as many questions as you need to. The more you understand about your condition, the more you’ll make sense of this strange new world and the faster your fear will dissipate.
I heard someone talk recently about the difference between being involved and invested. If you have kidney failure, you’re already involved; you need to become invested. Because my disease was triggered by years of ignoring my high blood pressure, I felt I’d brought it upon myself. I vowed to become the best renal patient I could be, and I truly think that attitude helped make the entire process easier.
You shouldn’t have to be a former educator like Patty to think smart.