My Fabulous Friend Lou DiNolfi

By Sandy Spatz

Lou is kind, gentle, compassionate, funny, loving, smart, a survivor, a beautiful human, a personal hero of mine. And Lou needs a kidney. We met during our freshman year at Washington University in St. Louis. We were in the Drama Department together, we lived together, danced together, cooked together, stayed up late talking and facing our existential neuroses together-as one does in college - and generally had each other’s backs. He was a competitive figure skater - long legs and arms and incredibly graceful.

Lou is a professional theater artist and has been for 30 years. His passion now mainly lies in teaching, mentoring, and coaching young artists. He has volunteered as a tutor for an adult literacy reading program, for Meals on Wheels, and is a supporter of Joey’s Acts of Love, in honor of his nephew, which has donated clothing, art supplies, and toys to young students in Central New York. Lou’s first language was Italian, and he LOVES that country. He is proud of what his immigrant parents accomplished, and the life they built for him and his sisters. Lou makes a mean cheesecake - his mama’s recipe, of course.

While there is much I could share about how Lou has arrived at this crossroads, I’ve decided to give you just a taste of Lou’s medical journey to date. Lou was diagnosed with Stage IV Non-Hodgkin’s Lymphoma in December 2012. It was a five-year “dance” with cancer that thanks to traditional and non-traditional approaches, the love and support of friends and family, a whole lot of prayer, and a positive attitude, Lou has been cancer-free for three years! I am amazed and in awe of what he has overcome. He’s like an Energizer Bunny; you can’t keep this middle-aged, balding Italian down! I wish the story ended there.

Somewhere along his journey, as the result of the chemotherapy or experimental medications, Lou’s kidneys began to fail. For the past ten months, he has been on dialysis treatments. Dialysis is not fun. 

It has been the most challenging thing he has ever had to do. There are details of his journey that Lou prefers I not talk about publicly. However, I’d be happy to share more with you one to one. 

Lou receives three dialysis treatments per week, and though they leave him exhausted, he remains positive and thankful for the “bonus days.”

As he recently shared with me, “There is an upside to facing your mortality, and that is the acknowledgment of the precious gift of time. We all have an expiration date, and my daily acknowledgment of this allows me to live in gratitude and appreciation. Letting go of the small stuff and experiencing the blessings of what I see around me, all that I receive from loved ones like honesty, humor, kindness, generosity, and, of course, affection has enriched my life. The gifts are immeasurable and far outweigh the challenges. I will continue to participate, contribute, and pay it forward as best I can, regardless of the mileage on these old (or a new) kidneys.” Lou remains pure Lou, always thinking of how he can step up and reach out to help others.

So that brings us to the here and now. Lou needs a kidney, and I am going to help him find one. I am asking you to help too. In the kidney transplant world, I am called Lou’s Donor Champion. The reality is I’m just someone who adores Lou and feels strongly that his beautiful, loving soul needs to be on the planet as long as possible.

Ultimately, Lou is looking for a living donor. Living organ transplants have a shorter wait time, better outcomes, and twice the organ life expectancy.

Let’s get down to brass tacks. Being a living donor is a tremendous act to consider and certainly not for everyone. If you already know you’d like to get the ball rolling to find out if you might be a candidate for Lou, bless you, and thank you. 

Love,

Sandy

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Great News! We have moved our “Let’s Find Lou a Kidney” efforts to the transplant clinic at Strong Memorial Hospital!

We feel that this gives Lou the best chance to find a living donor.

If you have already stepped up to explore donation for Lou, THANK YOU, you are awesome! The next step is to call Strong Memorial and register. They will let you know the easiest and most efficient way to have your records sent to them. 

Let’s get down to brass tacks. 

Being a living donor is a tremendous act to consider and certainly not for everyone. If you already know you’d like to get the ball rolling to find out if you might be a candidate for Lou, bless you, and thank you. 

If you or someone you know are ready to begin the process please use the information below.

Here is all of the contact information:

University of Rochester Medical Center (UR Medicine)

Strong Memorial Hospital

601 Elmwood Avenue

Rochester, NY 14642

Interested in becoming a living donor? 

Call 585-275-7753, press"1" and speak directly to a transplant coordinator.

Or to begin the process online go to:

www.urmc.rochester.edu/transplant/live-donor

Thank you for spreading the word, considering being a donor, and for being a part of Team Lou!

Sandy Spatz (she/her/hers)

www.stepbystepbysandy.com

 sandyspatz@rcn.com

773-206-0938

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