McIntosh: Living With Amyloid

I’m still struggling to pronounce it correctly. Amyloidosis. Phonetically, according to my outstanding team at the University of Colorado Anschutz Medical Center, it’s “am-uh-loi-DO-sis” Let’s just call it “Amyloid.” Call it what you want, it’s nasty stuff. First discovered back in the 1860’s, nobody’s been able to figure out why it happens and there is no cure. Googling about it can be scary. Survival rates vary depending on lots of stuff.

It took enough blood work to make vampires jealous, kidney and bone marrow biopsies, a PET scan and an echocardiogram to unearth. What the hell is it? Born in our bone marrow, it’s the buildup of an abnormal deposit of proteins in our tissues and organs. It can go “rogue” and attack our hearts, livers and kidneys. It’s very rare. Reliable sources say about 4,000 Americans are diagnosed annually, most between 50 and 65.

In my case, at this time, and let’s hope it stays this way, Amyloid is attacking my kidneys. How to treat? Chemotherapy and dialysis. Think of the stupid Russian invasion of Ukraine. God bless those brave Ukrainians fighting off Putin’s punks. That’s the chemotherapy’s job: Halt?Amyloid’s invasion of my kidneys and eventually, God willing and the creek don’t rise, make it beat a hasty retreat. It’s possible. Right now, the chemo is once a week.

Three times a week I receive dialysis. My kidneys need a break. Amyloid inflamed them tremendously. When thinking of kidneys, think of a pasta colander. Good ones have small holes. As Amyloid was attacking, my kidney “colanders” became enlarged and allowed vital proteins and nutrients to escape via urine. No wonder I was losing weight, muscle mass, appetite, sleeping poorly and getting up to pee constantly throughout the night.

Ironically, chemo treatments began April 12, 2023 and the first dialysis was the next day, my 65th birthday. A beloved buddy quipped over the phone, “Chemo and dialysis are the greatest birthday gifts you’ll ever receive. They gonna save your life.” Amen dude. I pray he’s correct.

I chalked it up to being an “Old man” and, duh, adopted that, “Learn to live with it,” attitude. Initially, so did other doctors. We thought it was a prostate issue. Nope. In looking back on this journey that began late last year with the symptoms described, one thing I foolishly downplayed? Foam in my urine. Middle aged fellas, please, if you notice your urine looks like a finely-poured Coors Light draft with a nice head on it, GET YOUR ASS TO THE DOCTOR. It’s a sign your kidneys are crying out for help. FOAM IS OUR FOE!

I have a bunch of golfing buddies, now retired and bugging me to follow in their footsteps since turning 65 and eligible for Social Security and Medicare. Life is short, gotta play more golf! Hah. Well, I ain’t retiring. I have a new job. Fighting for my life with the goal of annihilating Amyloid, or at least halting its advance, and encouraging others along their journeys as well.

Life. Rarely goes as planned right? It’s been the bedrock of A Stronger Cord’s work with men on the comeback trail from addiction, incarceration and homelessness. How do we take life’s unexpected and unwanted challenges and find purpose in it? To become a student, not victim, of life’s crappy moments? As I enter the fourth quarter of this thing called “life” and this new frontier with Amyloid, my mind wanders to an earlier time.

Back in high school, each day as I walked out of the Raytown South locker room and headed for football, basketball or baseball games or practice, I’d walk by a sign quoting Green Bay Packer legendary coach Vince Lombardi. It has never left me and “vibrates the iron string within” that life ain’t always fair. But what’s most important, is our attitude. Lombardi’s says, “I firmly believe that any man's finest hour, the greatest fulfillment of all that he holds dear, is that moment when he has worked his heart out in a good cause and lies exhausted on the field of battle - victorious.”

Living with Amyloid. Prevailing against what ails. Encouraging others to do the same. Game on!