Fridays with Mac: "Damn Good Thing"

It was shocking. The moment had your scribe struggling to keep it together. What? Tears were beginning to flow while profusely thanking a wonderful woman in Minnesota. “Wow, this has been a goal for a long time. Please tell Dr. Gertz thanks!”

I had always thought about this day, getting an audience with Morie Gertz, who most in the Amyloidosis world consider the “Godfather” of Amyloidosis research and treatment. I’ve watched the enthusiastic doctor a few times on Amyloidosis Research Consortium webinars. The guy is passionate about finding earlier detection and better treatments for folks like this ol’ knucklehead suffering from the rare bone-marrow disorder that randomly attacks the body. Yep. Rogue plasma proteins attack with a destructive hankering for hearts, livers, lungs and, in my case, the kidneys.

Nasty stuff with no current cure but promising trials trying to provide relief. Dr. Gertz is leading the way. Widely respected. There’s fire in his belly to figure this out and arrest amyloidosis, now. For the six months I’ve been receiving chemotherapy treatments against this ferocious foe, the Mayo Clinic professor emeritus has been top of mind, The best. I like to learn from the best.

It was certainly good news. A goal attained. Yay! I expected something like a subtle fist pump to arise upon the news. Nope. I started, kinda, bawling on the phone to this wonderful lady booking the appointment.

Perhaps, it’s this. Victories in life are always nice but when centered around trying to stay alive? Maybe it rattles you a bit deeper to the core? Who knows. This much I do know, a sense of gratitude flowed through thy blood vessels. There’s a whole bunch of folks who would love to get a little time with this Amyloidosis superstar. It’s like being a college quarterback, say Colorado’s Shedeur Sanders, and having Tom Brady as your personal coach. Beneficial.

I can’t wait to have Gertz and his team take a look at my records, images and slides and offer an assessment of the best path forward in winning this tussle. The team at UC-Anschutz, led by Dr. Peter Forsberg, has been great. However, they were the first to say, “Getting into seeing Gertz would be a good thing.”

Clinical trials. There are clinical trials out there pushing the envelope. Outliers trying to figure out what causes Amyloidosis, how to treat it and, ultimately, how to stop it in its tracks. Earlier detection is key. Mackenzie's Mission does a great job of that in educating first and second-year medical students to remember, as their medical careers progress? They’re seeing patients and the diagnosis is puzzling? Check for Amyloidosis. This disease is hard to detect. By the time most discover what’s ailing them? It’s too late. This ferocious foe likes to devour its prey. My kidneys are shot. Dialysis is my, and plenty of others, life-saving treatment until I can, there are no guarantees, receive a kidney transplant.

Amyloidosis is a cruel disease. I played golf recently with a guy who has it in his nerve tissues. Neuropathy is a major ailment for this courageous hacker. It was the first time we had met. What are the odds? 60-100,000 people in the world, there’s eight billion of us, have Amyloidosis. We have two in the same foursome? Divine Design.

Anyway, for 18 holes on a glorious Colorado fall day we smacked the ball around and talked about living with this crap. I was so inspired watching this athletic 66-year-old fight through the pain and play. You could tell walking was excruciating. Sure, I’ve got battered kidneys, dialysis and chemo to deal with in this fight. Seems pretty darn easy compared to what a Colorado mountain man is dealing with daily with severity unknown from day to day.

Perhaps the message from this moment is to count our blessings instead of bemoaning our challenges. Somebody’s got it tougher. However, when good fortune, like a meeting with the godfather of Amyloidosis appears? It’s okay for an old man to weep with gratitude, right?

Gratitude. A damn good thing for mind, body and soul in dealing with life’s dastardly deeds.