Every year, John has his annual physical evaluation. Results always came back normal. He was healthy and happy, working successfully as director of sales for the world’s largest manufacturer of custom-manufactured wheelchairs.
His physical results once again came back normal in November 2017. However, one month later, things changed. On the morning of Dec. 29, 2017, his daughter Charlotte’s birthday, John woke up looking completely different. He looked like he had gained substantial weight in his abdomen overnight. Everyone in his family was alarmed. He went to the Emergency Department at a community hospital to have 3 liters of fluid removed. Although the draining helped, it was unclear why he got to this state.
John began seeing a hepatologist, a specialist in the treatment and diagnosis of diseases in the liver, gallbladder, the biliary tree and pancreas, on the recommendation of his primary care physician. Test results showed his liver numbers and model for end-stage liver disease (MELD) score were normal, but he was diagnosed with Alpha-1 Antitrypsin (AAT) Deficiency, a genetic disorder that may result in lung or liver disease.
Early in March 2018, his MELD score rose rapidly.
“I went from being a normal, happy, healthy person, to very quickly not knowing what was wrong. Not knowing my prognosis was my worst fear,” John said.
John’s doctor advised him to come to UC Health, the region’s leader in innovative, compassionate and leading-edge liver expertise.
Before he was able to come in for his first transplant program meeting, John traveled to Kansas City for his son-in-law’s 30th birthday. Shortly after he arrived, however, he went into liver failure.
“As I was getting ready for the party, I was trying to tie my St. Patrick’s Day bowtie, but I couldn’t even do that,” John said.
He quickly returned to Cincinnati, where his doctor gave him mental acuity tests that in the past, he quickly completed. But this time, he failed them. He was also diagnosed with hepatic encephalopathy, a decline in brain function and buildup of ammonia that occurs as a result of severe liver damage.
“This is when I knew something was really wrong,” John said.
John’s condition continued to decline faster than he could have ever imagined. He and his whole family were frightened. He was given six weeks to live if he didn’t have a liver transplant.
With the assistance of his brother-in-law, a local family physician, John was able to come to University of Cincinnati Medical Center early for his liver transplant program meeting in May 2018, hosted by Shimul Shah, MD, UC Health surgeon and the James and Catherine Orr Endowed Chair in Liver Transplantation, director of the Division of Transplantation and professor in the Department of Surgery at the UC College of Medicine.
“Our aim is to always provide the best possible care for patients with liver disease in our community,” Dr. Shah said.
John was accepted quickly into UC Health’s liver transplant program. He was also fortunate to get in for three separate appointments fast to ensure he was physically strong enough to survive a transplant. He referred to this as “a miracle”—one of many he had.
“For all of this to happen so quickly, it’s so unheard of. You just don’t see it,” John said.
On June 21, 2018, John received an email from the United Network for Organ Sharing (UNOS) saying he was accepted onto the national transplant list. Now, it would just be a matter of waiting for the Mock family.
Instead of waiting for possibly weeks or months, John received a life-altering call only four hours later. There was a donor match just miles away from him.
Two days earlier, Cletus (Clete) H. Schnieders III, a 41-year-old with a wife and three children in Greenhills, Ohio, passed away suddenly after choking and going without oxygen for an extended time. Although the family was grief-stricken, Clete was a registered organ donor, and they knew he would’ve wanted his organs donated to someone who could use them after his death.
Of all the individuals on the liver transplant waiting list, John was the only match. Carrie Schnieders, Clete’s widow, and the rest of his family were proud of his heroic decision.
John’s new liver was quickly transported via UC Health Air Care to UC Medical Center. At 2 a.m. on June 22, 2018, he had his transplant.
“I’ve been given a second chance at life,” John said. “Not too many people receive that gift. I always believed that UC Health was going to come through for me.”
From a diagnosis where he only had weeks to live, John was now back to feeling like himself again. He returned home following five days in the surgical intensive care unit (SICU) and recovery. Six weeks later, he was back to work.
“I was amazed at how fast everything progressed. As quickly I was diagnosed with liver failure, I was back to doing everything I once did,” John said. “I started traveling as much as I did before and started working the same hours.”
The 58 year old from Kenwood, Ohio, has always focused on giving back to his community. He attended Cincinnati St. Xavier High School, when he started dating his future wife, Sarah, before going on to Xavier University to get his bachelor’s in sociology, with a minor in history and psychology.
John works harder than ever to give back to the community. He currently serves as an ambassador for UNOS, LifeCenter of Cincinnati and Honor Flight, whose mission is to fly veterans to Washington, D.C. to visit the memorials of the respective wars they bravely served in. John also joined the board of May We Help, a volunteer organization to help those with special needs pursue their passions in life. He currently serves as secretary and co-chair of the Volunteer Committee.
“I have a mission post-transplant, which is to be an advocate and ambassador where I can change or improve lives,” John said.
Not all transplant recipients have the opportunity to meet their donor’s family to thank them. There must be a mutual interest from both sides. Right before John had his transplant, his youngest daughter, Rebecca, reached out to LifeCenter to see if they would eventually be able to meet the family of the person who saved John’s life.
Twenty-seven days after his transplant, John got the opportunity to meet the Schnieders family. They first met at LifeCenter during an arranged visit. Since then, John has attended more Donate Life events with the family. They even got back together at an Elder High School football game vs St. Xavier. Elder, Clete’s alma mater, created a scholarship in his name.
During John’s journey, he had the greatest support from Sarah and his four amazing children—Nicholas, Amanda, Charlotte and Rebecca. He also was inspired by how friends and members of his community offered their support in any way they could.
That three-month window, from going into liver failure to having his transplant, was difficult for John, but he knew he was in the right place at UC Health.
“I can’t speak highly enough about UC Health. The intelligence, the expertise and the technology,” John said. “That’s why you go to UC Health. You’re in a beautiful facility and you don’t even feel like you’re in a hospital. My advice is to do everything your care team tells you. They are all focused on getting you out quickly but making sure they do enough to ensure you don’t have to come back.”
Post-surgery, John sees Khurram Bari, MD, UC Health physician and assistant professor in the Division of Digestive Diseases in the Department of Internal Medicine at the UC College of Medicine.
“Liver disease can be devastating,” Dr. Bari said. “It takes a team, including the patients and their support groups to undergo a successful liver transplant.”
“I’m the recipient of so many miracles that can never be explained,” John said.
For the rest of his life, John will be paying it forward to others by serving as an inspiring community advocate.
Clete Schnieders made the decision to become an organ donor so that two people wouldn’t have to die. Thanks to him, John’s advocacy and service will continue to make a difference in the future.
Seventy-Six Days of Quarantine
When the COVID-19 global pandemic started to make its way through the region earlier this year, John had to take extra precautions to stay safe. As a transplant recipient with a compromised immune system, John was more susceptible to contracting the virus than the normal person.
For 76 days, John had to remain quarantined inside his home. He couldn’t even make trips out to the grocery store or pharmacy. Family, friends and neighbors left his groceries and medications at his front door, then he would bring them in and decontaminate everything.
While this was challenging, the most agonizing part for John was not being able to see his children and grandkids, all of whom he is very close with. From Feb. 16 to May 1, 2020, he could only interact with them through windows and social media.
“I just wanted to be able to hold my grandchildren, even for just a little while,” John said.
In order to maintain his mental health and enjoy at least some time outside of his home, John went on long drives by himself. He also went on walks around his neighborhood early in the morning before anyone was up to prevent the chances of contact with others.
John also continues to be involved in UC Health’s Liver Transplant Support Group, hosted by Dr. Shah. This includes patients who are on the transplant waitlist and those who received a transplant before or during COVID-19. Patients can ask questions to see how they should protect themselves from the virus, or how to cope with the challenges of waiting for a new liver.
“It’s been really scary because we can’t see our caregivers face-to-face. We are all socially isolated,” John said. “But getting on those virtual meetings and phone calls with Dr. Shah is comforting. He reminds us of what we are supposed to do. He helps us manage our expectations.”
LifeCenter also hosts virtual meetings for their ambassadors to remain connected during the pandemic. John was cleared to leave his house on May 2, 2020, as long as he wears a face mask, maintains social distance and uses hand sanitizer often. This allowed him to walk Rebecca down the aisle for her wedding. Rebecca’s wedding was supposed to host over 200 people in a large Downtown Cincinnati church, but instead, turned into a small wedding of 12 with a drive-by parade to keep everyone safe. Clete’s family was also part of the wedding.
When asked what it meant to be able to walk his daughter down the aisle, John had no words and his eyes watered. Rebecca was the last person he saw before undergoing his liver transplant. She also played an important role in helping him connect with his donor’s family.
John’s Two-Year Transplant Anniversary
John recently celebrated two years since his transplant. Although he must continue to be careful during the pandemic, he remains healthy and safe. He sees his family regularly, continuing to maintain social distance.
Even this once-in-a-lifetime pandemic hasn’t stopped John from staying in close contact with his donor’s family. They’ve connected virtually over the past few months. As devastating as losing Clete was, Carrie and her family have found the grieving process to be easier knowing that others are benefitting from Clete’s heroism to be an organ donor.
Recently, friends and neighbors around Clete’s hometown wanted to honor him on what would have been his 43rd birthday on April 19, 2020. Over 100 cars, including John, drove up the street by Clete’s birth mother’s house to pay their respects to the family.
“If it weren’t for Clete, I wouldn’t have been able to walk my daughter down the aisle,” John said. “I wouldn’t be here right now.”
John and his brother, Joe, attended a memorial mass for Clete’s two-year death anniversary on Father’s Day, June 21, 2020, where John was once again able to visit with the extended Schnieders family. John was also able to wish Clete’s mother a happy birthday, one day early.
Moving forward, John knows he will have to continue to be vigilant until there is a vaccine for COVID-19. He is working from home and limiting himself to exposure from others outside of his family. As someone who often used to travel for work, meet friends for breakfast and make acquaintances at his neighborhood Kroger, this is a change that John believes will only be temporary. He also sees this as a small price to pay since he is alive and healthy—two things he wasn’t sure he’d be able to say in 2018.
After COVID-19, John looks forward to returning to the community to be an advocate for organ donation, so that others may also be able to give hope to those who need it the most.