McIntosh: "Living with Amyloidosis"
My life-saving home three days a week

McIntosh: "Living with Amyloidosis"

The faces. The wonderment. Overpowering visual images and intellectual curiosity burning deep within each and every Tuesday, Thursday and Saturday when entering the Fresenius Kidney Care Center in Aurora, Colorado.

It’s early when I arrive, about 5:20 each morning. It takes about 20 minutes for the staff to get this ol’ fella living with Amyloid prepared for the four-hour dialysis treatment. They must check vitals like blood pressure, heart rate and how the machine is performing in pulling blood out, cleaning it and returning it to a compromised body fighting serious kidney damage because of the rare and abnormal protein my body’s bone marrow decided to produce. This rogue menace doesn’t “fold” properly and decides to get nasty and goes after vital organs, tissues and nerves, like my kidneys and intestinal tract. Chemo and dialysis are my best friends right now. Things are going pretty well. Nine weeks into treatment, doctors are pleased and we’re hopeful to win this battle.

While walking to a chair in the back of the facility, I pass many others remaining above ground thanks to the life-saving aspects of dialysis. We’re masked. Necessary for folks with compromised immune systems. It’s tough to see faces. A collection of ailing souls. There’s really not an opportunity to socialize given our purpose at Fresenius is increasing mortality rates, not making new friends.

Constant alarm bells alerting wonderful staff members to possible issues, their quick responses and the humming of the filtering machines makes for a lively atmosphere. Most seem, from my vantage point, to try and sleep, watch television or read to pass the time. I usually write, read, communicate with others via text or email and sleep. But for a dude who usually needs darkness and silence for slumber? Ain’t the ideal place.

As the day progresses, more chairs are filled. By the time my four-hour treatment’s done, all chairs have occupants. The faces. The wonderment. The journalist within wants to visit with comrades and ask a few simple questions:?“I wonder how you got here? What’s your story? Everyone has one. Some have been in dialysis for 15 years. Wow

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One with nothing to do with the “stories” of brothers and sisters receiving dialysis is another indictment on the American health care industry. There’s a shortage of “chairs.” Demand is greater than supply. The world’s richest nation has such dysfunction in its ability to supply critical care? Embarrassing. We can do better. We had to search far and wide and were lucky this Fresenius location had a an early-morning spot. Blessed.

Off the soap box and back to faces and wonderment. I’ve had made one friend. For privacy reasons, I’m changing this beautiful soul’s name to “Berta.” Think it’s an apt fictitious name considering her bubbly personality. “Berta” and I start treatments the same days and times. We’re often the only folks in the waiting room before being called from the lobby into the clinic.

“Berta” is a sweet soul always upbeat and a beam of positive energy. She’s got to be close to 80+, has six children ranging in age from 63 to 23. The latter being a foster child (boy) who stole the Oklahoma native’s heart and was adopted. While fighting for her life, she cares for her family. Berta arrives by Uber on our date mornings. Thankfully, medical insurance covers the fare. Berta receives three hours of treatment each day and is gone before I’m finished. I don’t get to say goodbye.

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A room with a view

In quiet time in the back corner, I gaze out upon the others and pray more and more for their well being. “Dear God, may they be comforted with the support group this ol’ knucklehead is blessed to possess!”. I know from talking with nurses, that’s ain’t the case for many. I pray that changes. Now. I pray they feel the energy coming from the legion of supporters tossing positive vibes my way. Prayer Warriors. Karma Champions. Good-vibe Masters. Call ‘em what you want, don’t matter to me. This much I know, it makes a difference. It’s also good medicine offering miraculous outcomes. Sometimes, far greater than dialysis machines keeping us alive. Keep ‘em coming. Thanks!


Elaine Perlman

Columbia University Professor turned Executive Director of Waitlist Zero advocating for living kidney donation & preventative health

1 年

I am a living kidney donor and a passionate advocate to increase the number of living kidney donations. As the Director of Waitlist Zero, I helped pass a supportive law for kidney donors in New York State in 2022 and am now working on passing two federal bills and a Colorado State bill that will dissolve barriers to kidney donation. Mr. McIntosh, I would like to share the details with you. Please email me: [email protected]

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Nancy Dale Alterman

Artist at NancyDale Designs

1 年

You are an inspiration and a trooper ??????

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J.J. Flannigan

Capital Mitigation Specialist/Office of Legal Advocacy

1 年

Hello Mark, you and your family are in my thoughts and prayers always. Thanks for always being huge support of my days at CU. We'll see each other when I come to CU for the Nebraska game. ~#2

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Zbigniew "ZIBI" Postek

Global Expansion Engineer

1 年

Mark, get well buddy!

William J. Kelly III ("Bill")

Managing Partner at Kelly Law Partners, LLC

1 年

Wonderful piece. This ol' knucklehead read every word of it. Thanks for posting.

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