Interviewing Marcelo Pena The expression “making up for lost time” is used in many different situations. Buckets lists. To-do lists. Rekindled friendships and long-lost loves.
But what if you spent decades of your life – from childhood in adulthood – feeling sick, and unable to live a fulfilling life? And what if, after living that way all those years, you suddenly found something that could help you feel better, be more independent, and enjoy the things you’d been missing?
This is a quick glimpse into the life of Marcelo*, a 35-year-old home hemodialysis patient from North Carolina doing everything in his power to make up for the time he lost to end stage renal disease.
Childhood Interrupted
Marcelo started his life like most kids. He was happy and healthy, enjoyed playing with his cousins, and attended grade school in his home city of Chicago. At 10-years old he got sick and went to his doctor to figure out what was going on. After some testing, they found blood and protein in his urine and immediately ordered a biopsy. Then, a short time later, on his eleventh birthday, he was diagnosed with Focal Segmental glomerulosclerosis (FSGS). FSGS is a disease that causes scar tissue build-up on the kidneys and can permanently impair their function. When Marcelo was 13 it was determined that his kidney function had declined and was now at a point where a decision had to be made, receive a transplant or start dialysis. That’s when Marcelo’s mother offered her own kidney. “My mother was my hero,” says Marcelo. “She gave me life twice. She said, ‘I’ll give him one of my kidneys and hopefully this will just all be a memory.’”
Sadly the kidney Marcelo received only lasted around 6 months, once again due to complications from FSGS and he had to start dialysis. First it was peritoneal dialysis (PD), which was effective but left Marcelo with what felt like almost no time for himself. “Back then the machines were different, and I had to dialyze up to 12 hours straight,” Marcelo explains. “That was my life for three years. I felt like no one was going through what I was going through. I felt alone for a very long time.”
In his late teens, Marcelo learned he could not continue PD and doctors prescribed in-center hemodialysis (ICHD) as the only alternative. That began a 16-year journey as an in-center patient. During that time, Marcelo experienced other health problems that almost turned deadly. And even though dialysis therapy kept him alive, he saw it as taking away from his quality of life.
“It was almost like I was sentenced to dialysis,” Marcelo says. “For 16 years it was a Monday therapy session, and then I’d feel tired all day and into Tuesday. When I felt somewhat OK, I’d go out for a walk or something, but the next day I had to start all over again. It felt like dialysis, dialysis, dialysis, nonstop. I was so depressed and on all kinds of medications and antidepressants, just trying to cope.”
It wasn’t until his thirties that Marcelo learned of another alternative to ICHD. A nurse at his clinic began telling him about more frequent home hemodialysis. Marcelo was in a dark place, and he needed a change, so he decided to try it. After his training was complete, he was able to do his therapy at home for the first time in decades. In addition to the physical changes Marcelo has seen and felt, he’s found several ways to make up for all those lost years. Since starting on HHD he has taken his NxStage machine to Disney World, Nashville, North Carolina, and Pennsylvania. He hosts a kidney health-based radio show on iHeart Radio and has an established presence on social media. He’s learning to play ukulele, writing a book, and is certified in yoga and meditation instruction. He also has a new best friend – a Boston Terrier named Benjamin!
SEEYA NeXt time! To send us a voicemail to ask a question, make a comment or to tell us about your medical journey click on this link! https://podcasters.spotify.com/pod/show/blindchickliving/message
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