Dad's Condition...
In His Own Words
How long do you have to live?
Doctors say my survival odds are 50% this year and 33% next year. But I'm fighting hard.
How did you learn about your shortened life expectancy?
During 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 did you learn about your kidney failure?
I was visiting my girls over Christmas 2022. I lost consciousness in front of my oldest daughter... so she broke a few traffic laws and found an emergency room with the help of my youngest daughter – an emergency room nurse! When I woke up in ICU, I didn’t know who or where I was for a week. The doctors said I would have died in 24 hours had I not been admitted. Grateful for loving, caring daughters!
How does kidney failure affect you?
Nausea from low BP, breathing problems and - worst of all - muscle cramps in my feet, legs and hands that keep me awake at night.
What caused your kidney failure?
Kidney stones, BP = 240/200.
Can you extend your life?
Nope. So, I’m fanatical about diet, minimizing stress and staying close with family and friends. I'm 30 times more likely to die from "sudden cardiac syndrome" than the general population. The hard part is the thought of leaving my girls, my partner and my dogs.
How are you handling this? How do you keep your sanity?
At first, not well at all. I was angry, confused and frustrated. The sudden prospect of dying at a young age was a shock and hard to handle. The worst part of this is watching friends at my clinic getting sick and taken away by EMTs, or hearing that someone died.
But through grace, I have faith, hope and gratitude. I lean on support from a wonderful cousin and her husband (dealing with their own cancer challenge) and the love of 12 volunteers who rushed forward to be tested on my behalf.
Tell me one thing you've done in your life that shows the kind of person you are.
After my father passed, I promised my mom I'd call her every day of her life so she wouldn't be lonely. I kept that promise for 12 years until she couldn't answer the phone anymore. I took care of her for years. I miss her terribly, not just because we were super close, but for the example she set to my daughters on the importance of family loyalty and connection.
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 on Facebook. It backfired big time and cost me work and 2 job opportunities. Then came identity theft and financial scams. However, 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. And I'm not waiting for a new kidney to start....
First, since I spent most of my career in artificial intelligence and tech, I’d like to develop smart, AI-based 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 at the federal level that increase the living donor pool and prevent unnecessary early deaths from kidney disease.
Some useless facts about me...
Favorite Recipe?
Double-cooked crispy carnitas tacos with white onion, mango, cilantro, crema, avocado, white crumbly cheese 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.
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). For something truly different but amazing, check out the Filipino singer, Marcelito Pomoy, who sang “The Prayer” on America’s Got Talent. People were so touched that they cried. Amazing.
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.
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?
I'm blessed with many heroes, actually. My cousins are angels who care for me, love me every day and support me at my darkest moments. Friends from high school whom I haven't spoken to in several years have reached out with tremendous support.
I'd like to pay special mention to four people that make a difference behind the scenes, selflessly, and give their time sacrificially:
My cousin, Suzanne, founded a non-profit called 6000 Moms that provides real, tangible support to victims of cartel violence. Their help saves and transforms lives.
I'm in awe of Sister Paulanne's 60-year ministry at OLPH in Glenview, IL, who provides services to poor and needy families. She's a force of nature who helps people at their lowest point.
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.
Facts and Sources
Kidney Community Can Learn From Pioneers in Artificial Intelligence Who Advanced Outcomes for Autistic People
Source: LinkedIn, Dan Feshbach
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