Our Dad's Condition... In His Own Words
How long do you have to live?
Everyone's different, but the doctors said my survival odds are around 50% this year and 33% next year. But those are estimates and, frankly, nobody really knows for sure.
How did you learn about your kidney failure?
I was visiting my girls over Christmas in 2023. I suddenly collapsed in front of my oldest daughter... she broke a few traffic laws and found an emergency room with the help of my youngest daughter – an emergency room nurse! I was not conscious. When I woke up in ICU, I didn’t know who or where I was. The doctors said I would have died in 24 hours. Grateful for loving, caring daughters!
What caused your kidney failure?
Doctors said it was kidney stones and blood pressure.
How did you learn about your shortened life expectancy?
After my hospitalization, I went into dialysis. My doctor came to my chair and asked, “Do you have any living donors willing to give you a kidney?” I replied, “Probably my kids and cousins will help.” The doctor said, “Good, hurry up with that, because the transplant wait list is longer than you will probably live.” So much for bedside manners.
How are you handling this? How do you keep your sanity?
At first, I was in shock and angry. It felt unfair, like I was being robbed of years of life - way too young - and punished for something I didn't do. So I leaned on support from a wonderful cousin and her husband who were dealing with a cancer challenge and the love I felt from 12 people who rushed forward to be tested on my behalf. On a daily basis, my sanity includes:
Listening to my Spotify playlist of all the songs I sang to my girls growing up
Cooking human grade food for my Airedale, Olivia, and her brother, Rufus, who I hug as often as I can
Grace that produces Faith that creates Hope and Gratitude
How can you extend your life?
I can't. But to maximize quality of life, I’m fanatical about what I eat. I minimize stress, never miss dialysis, stay “in community” with family and friends, and maintain inner strength through grace. I keep a mindset of gratefulness – living in the moment, giving/receiving love, and helping others. The hard part is the thought of leaving my girls, my partner and my dog.
Tell me about your illness
Argh... don't like to focus on this. The main symptoms are nausea from low blood pressure, getting faint, losing breath and muscle cramps in my feet, legs and hands that keep me up at night.
Have others volunteered to give you a kidney?
Yes. Family, cousins and friends – over 12 volunteers so far – went through the evaluation process. We were shocked that nobody passed their health screen – especially those in their 20s and 30s – but a few got treatment for previously-unknown medical conditions which came to light through this process. So that’s a blessing.
How is your health otherwise?
Strong… both physical and mental. I’ve had every test, screen and scan imaginable. I have no other health issues, don’t smoke or drink, so my odds of survival post-transplant are excellent.
Why don’t you reveal your full name?
I did that before on Facebook. It backfired big time and cost me 2 job opportunities. Then came identity theft and financial scams. If you become a donor, I’m happy to share my name with you.
How will your life change if you get a new kidney?
This is my favorite question. Besides the obvious gift of being able to see my children, I'd like to focus on two things.
First, since I spent most of my career in artificial intelligence, I’d like to develop AI tools to help kidney patients and their loved ones find community and financial resources, plan their renal diet, manage their insurance and stay positive. A friend of mine with a similar background has done this for the Autism community. I believe the community of kidney patients needs help and I have the know-how and tools to do that.
Second, I want to advocate at the state and federal level for a tax credit for kidney donors. This issue has been tackled by a few states – but not all – and we desperately need to put proactive policies in place that increase the living donor pool and prevent unnecessary early deaths from kidney disease.
Here's some totally useless information about me.
My Favorite Recipe?
Double-cooked crispy carnitas tacos with onion, mango, cilantro, crema, avocado and salsa verde bought from my favorite store on the planet, Carnicerias Jimenez (Wheeling IL). I do my tortillas in a skillet with olive oil, lime and my own mix of dried Mexican peppers. My long-time partner - a Spanish woman - says it's the best taco on the planet.
My Favorite Songs?
I have hundreds, but the most important song of my life is *NSYNC' "This I Promise You," which holds eternal meaning... it's a promise I made (and kept) to my girls at a difficult time in our lives. Other favs I sang to my daughters include "More Than Words" (Extreme), "Un-Break My Heart" (Tony Braxton), "How Do I Live" (LeAnn Rimes), "All My Life" (Aaron Neville, Linda Ronstadt) and "When She Cries" (Restless Heart).
What's The Deal With Your Dog, Olivia?
First, I'm a dog person-whisperer-savant through and through... if only humans were as nice to each other as dogs are to us. Second, she's 100 pounds of pure love. Third, she's saved me in some dark moments.
Got any favorite memories with your girls you'd like to share?
Tons, but I'll share a couple that stand out in my memory:
I've been to four Backstreet Boys concerts -- my daughter Alex is a fanatic. We were at a concert in Milwaukee. The guys were all wearing cowboy hats during a particular song. As the song ended,, Brian Littrell tossed his hat into the crowd. I caught it. I became an instant hero to my girls. And yes, I still have the hat.
We were on vacation in Orlando. We finished the WDW parks and were looking for some evening fun. So we researched where NSYNC's recording studio was located, drove there and did some serious sleuthing. After an hour of walking in and out of buildings, we finally found their studio. A security guard chased us out. Wicked fun!
Who are your heroes? Where do you get your inspiration from?
I'm motivated by people and organizations that make a difference behind the scenes, selflessly, and give their time sacrificially:
My cousin, Suzanne, runs a non-profit called 6000 Moms that provides real, tangible support to victims of cartel violence around the world. Their help saves and transforms lives.
For service to poor and needy families that spans generations, I'm in awe of Sister Paulanne's 60-year ministry in Glenview, IL. She's a humble force of nature who meets people at their lowest point and time of greatest need.
For inspiration and faith-building, I listen to Ashley Woodridge at Christ's Church of the Valley whose service to the underserved in the Phoenix area knows no bounds, and Bishop Barron, a Catholic theologian and author. His 15-minute talks are about as deep, profound and challenging as anything I've ever heard.
