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Walking for Dad - In Loving Memory of Michael Ferrauilo

Olivia Ferrauilo Petronio

Olivia Ferrauilo Petronio

Why do I walk? I'm walking for my dad. I'm walking because our Ferrauilo family has been plagued with Polycystic Kidney Disease (PKD) for at least 4 generations now. It's a genetic disease where cysts grow inside the kidneys, causing them to become enlarged and eventually lose function.

My dad was diagnosed with PKD in his mid-20s. Despite close monitoring, medication, and managing his comorbidites he went into kidney failure when he turned 40. He started on peritoneal dialysis in 2005. With this type of dialysis, he had a catheter in his abdomen and he was able to get dialyzed at home. I still remember those giant dialysate bags overflowing our bathtub. He was usually in bed and hooked up by 8pm so he could get his full treatment and still wake up at 4am to get to work early! Meanwhile Mom was testing to be his living donor and after a very rigorous process she was deemed a match! Upon prepping Dad for transplant, doctors found what they thought were cancerous tumors on both of his kidneys. So in November 2005 he had a double nephrectomy--they took out both diseased kidneys which turned out to be the size of rugby balls. It was a riskier surgery than the transplant but after many answered prayers there was NO cancer found on those kidneys and he was cleared for transplant! Because the double nephrectomy surgery compromised his peritoneal cavity (basically his abdomen), he wasn't able to be on peritoneal dialysis at home anymore. He got his temporary HD cath and started hemodialysis at Strong Hospital where he went 3 times per week for 4-hour treatments. It was time-consuming and exhausting but you'd never hear him complain.

January 5, 2006 was finally Transplant Day. I remember sitting in that waiting room at Strong Hospital with my sister Emily all day while we had a revolving door of friends and family with us. Mom gave me a notebook and she wanted me to document the surgery updates and any other details of the day that she was "missing". I was 13 at the time. Now you see where I get it from, and all these years later I'm still "the writer"🙈 Their kidney transplant was an instant success! And with that Mom became the first non-related living donor in our Ferrauilo family. While they were still recovering in the hospital we would go visit everyday after school. Mom typically wasn't looking too hot (sorry Mom) but still managed to spend the entire day in Dad's room. Her nurses always knew where to find her-sitting uncomfortably in her wheelchair while Dad was lounging in his recliner and commanding the room with his newfound energy! They used to do their walks around the nurses station together and we joke about how Dad was doing laps around her😂 Don't worry, after just a few weeks on the couch Mom bounced back and it was as if nothing happened. When a donor loses a kidney, their body just needs time to adjust. Eventually the remaining kidney picks up the slack and it's as if they still have both kidneys. The human body is pretty amazing...

With the transplant came the beginning of Dad's road of immunosuppression therapy. Making sure that his body didn't attack his new "foreign" kidney was essential to keeping the transplant a success. He had the common comorbidities that coincided with kidney disease (diabetes, hypertension, etc), so finding the perfect medication combination for anyone is always a bit of trial and error. He started on insulin to control his sugar and he was on monthly iron infusions to treat the severe anemia. Overall he was doing well and managing his health, working full-time as a business owner, golfing on the weekends, road trips and vacations with family, etc. Nothing EVER held him back

Until November 2021. Dad got Covid. Being immunosuppressed prevented him from fighting it on his own like most people were able to at that time. He was hospitalized at Strong Hospital in Rochester, NY and spent a few days in ICU for high flow oxygen (no ventilator) and extra monitoring. At this time we had the drug Remdesivir to treat Covid but the side effect is that it's damaging to the kidneys. Mom's kidney had lasted a remarkable 16 years and he knew it was reaching the end of its life. He made the conscious decision to take the Remdesivir knowing it was possible he'd go into kidney failure again. With that his Covid symptoms began to improve. For days he was was ready to leave the ICU to go to a regular inpatient unit but the hospital was full and there were no beds. There were no visitors allowed in the hospital at this time, even for non-Covid patients. But in true Dad-fashion he was sick of the hospital gowns and had Emily bending over backwards trying to figure out how she can get the brand new "crisp white" undershirts he wanted delivered to his room. He was getting in trouble for taking his oxygen off and walking to the bathroom to shave. He was FINE. But things took a very drastic turn early in the morning on November 19, 2021. He coded and began his downward spiral. We were told he wouldn't make it through the night, he wouldn't make it to the elevator, he had "profound" brain damage, he would never wake up It took weeks to find out that he contracted hospital-acquired MRSA from just being in the hospital. But they didn't know him. And we learned that "scans are in the eye of the beholder" as one of the docs said. Because on December 2nd he woke up without any mental deficits✨ By mid-January he was awake enough to gather what happened to him. Because of the extensive damage from Covid and MRSA he was dialysis-dependent, ventilator-dependent, and suffered irreversible necrosis to all extremities from the months of vasopressors that kept him alive. He was told he needed both hands and feet amputated. His response, you ask? *Blank stare* for a few moments, followed by "What are we waiting for? Let's go!" The next week his hands were amputated. And a week after that, they took his legs. And just like that he was a quadruple amputee, trached on a ventilator, and dependent on dialysis. Despite his new shocking reality he kicked ASS every day with a "glass half-full" attitude for 13 months. He was the greatest warrior there ever was. I tell you this not to share details of his battle but to share with you that

This👏🏻 Is👏🏻 Not👏🏻 Normal👏🏻!

He was only 56 years old when he got sick with something that the majority of people at that time were able to fully recover from without needing hospitalization. But no, he was immunocompromised. His body had no way to protect itself after getting his kidney transplant and it was the 16 years of necessary immunosuppression that took him away from us.

I'm walking because kidney disease was the stem of Dad's illness. It was the common denominator throughout his life, and the driving force of the rest of his comorbidities. Without kidney disease, he wouldn't have gone into failure, needed a transplant, and become immunosuppressed. I hate to be the one to say the "shoulda, woulda, coulda"s, but if he didn't have kidney disease he'd absolutely still be here today. He didn't do anything to deserve kidney disease-he was never a drinker, never a smoker, never did anything that caused him to worsen what he was already born with. So I'm walking really, for justice. Because it's not fair that he's gone. And it's not fair that kidney disease coupled with immunosuppression took away his chances of survival. He deserved so much more. I'm walking for Dad. #StrongAFMAF always 💪🏼🦾✨


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