MY STORY
I (Marc Mandeng) am a quiet, resilient fighter who needs YOUR help. I’ve been diagnosed with end stage kidney failure and need a living kidney donor to save my life.
I’ve always strived to take care of myself…eaten well, stayed active, and avoided risky habits. But sometimes, no matter how careful you are, genetics have their own plans. High blood pressure is common in my family, and I was diagnosed in my 40’s. Uncontrolled high blood pressure a leading cause of kidney failure and can harm the kidneys in a short period of time. I didn't know my high blood pressure was harming my kidneys until a few years ago when flu-like symptoms revealed a more serious issue. I felt unusually weak, had trouble breathing, and eventually ended up in the ER. That’s when I found out that my kidneys were failing and I would need a kidney transplant. It was a frightening, life-changing moment…one I never saw coming.
There are only two treatments for people living with kidney failure: dialysis or transplant. Getting on the transplant list is a grueling process. You must prove your body can handle the surgery, go through countless tests, and show that you have a support system in place. For me, it meant undergoing additional heart tests and a cardiac catheterization. It was difficult but with the support of my mother, family, and a few close friends, I persevered and passed the rigorous medical testing and am now active on the list. Getting listed isn’t just a medical milestone-it’s a symbol of hope and the start of a new chapter.
While I wait for a transplant, I must do dialysis treatments to stay alive. I spend over 60 hours each week on dialysis, the equivalent of almost two full-time jobs! I’m hooked up to a machine 7 days a week for 9 hours at a time to filter the toxins out of my blood. Dialysis is hard and limits my quality of life. I experience dizziness, crushing fatigue, and extreme weakness. I’m unable to travel freely and just one night away requires lugging a 30-pound box of dialysis supplies and my machine. I’ve had to alter my diet and must follow a low potassium, and phosphorous diet to prevent further damage to my kidneys. Sadly, I can’t eat many of my favorite foods like ice cream, collard greens, pineapple, and dairy. I can’t even have a bowl of cereal for breakfast. I must limit my fluid intake to just 32 ounces a day. Dialysis isn’t living, it’s existing.
I might not look sick, but I am and living with kidney failure is hard. My days are filled with numerous doctor’s appointments, lab work, and the everyday logistics of managing dialysis. I’m no longer able to work. Before being diagnosed with kidney failure, I had a job I genuinely loved, working on magical holiday installations in New York City. I miss this work that helped bring joy to places like Macy’s and Rockefeller center. Despite all these challenges, I’m a fighter and not giving up!
People often describe me as quiet and introspective. I’m not the loudest in the room but that doesn’t mean I’m not paying attention. I’m thoughtful, dependable, and resilient. I care deeply for my family and friends and do my best to show up when others need me. Even now, I try to find meaning where I can…volunteering when I’m able, learning new things online, and pursuing my passion of photography.
With a new kidney, I won’t be tied to a machine and can live freely without the constraints of dialysis. I dream of getting back to creative work. I want to build things that make people smile and be part of something bigger than myself. A new kidney will give me the opportunity to travel and explore new places. Receiving a kidney means a second chance at life and more time to make memories with my family and friends.
The wait times to get a kidney from a deceased donor average 3-5 years or longer. My doctors and transplant team have advised me to look for a living donor. Finding a living donor will help me get “off the list” sooner and on to living my life. A kidney from a living donor often has better outcomes, averaging 15 to 20 years or more versus 8-12 years for a deceased donor kidney. Most living donor surgeries are done laparoscopically and discharge from the hospital is usually 24-48 hours after surgery. The life expectancy of a living donor is typically longer than the average person.
To learn more about living kidney donation or start the testing process on my behalf, please contact Jackie Haney at The Christ Hospital at 513.585.1440 or Jacqueline.haney@thechristhospital.com. The living donor process is confidential, and I won’t be notified if you contact the transplant team. All costs for testing and surgery are covered by my insurance.
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Thank you for considering giving the gift of life through living kidney donation. You could save my life or one of the 100,000 people waiting for a kidney transplant. I’m holding on to hope….and, with your help, a new beginning.