A transplant journey

A wife and organ donor recounts her experiences and those of her husband, a lung and kidney recipient

Watkins Glen's Deb Schmidt and her husband Gary -- the latter a member of the Village Board -- traveled a long and frightening road through the valley of Gary's declining health and back again, with organ transplants a vital part of their story. Now, as part of National Donate Life Month, Deb provides us with the following account, told in the third person.

By Deb Schmidt

WATKINS GLEN, April 19, 2019 -- The journey began sometime near the end of 2012 when Gary went to his family doctor for an annoying dry cough, which he had for almost a full year. Subsequent to many medical tests, he was referred to a local pulmonologist. After further investigation by the pulmonologist, it was suspected that he had a disease called Pulmonary Fibrosis.

Gary was referred to a local thoracic surgeon for a lung biopsy to confirm the suspicion. On May 1, 2013, the biopsy was performed. While in ICU and awaiting the biopsy results, Gary became much sicker -- needed help breathing -- and had to be placed on 95% oxygen by way of a BiPap machine. Gary was losing this battle and could not be helped locally. With the perseverance of his wife Deb, Gary was ultimately flown by air ambulance to the Cleveland Clinic in Ohio.

It was at the Cleveland Clinic where it was decided that Gary would need a double lung transplant in order to survive. He was diagnosed with “idiopathic pulmonary fibrosis.” Prior to being escorted by ambulance to the Elmira-Corning Regional airport, Gary was sedated and ventilated by the Cleveland Clinic team who came to his rescue. Upon his arrival at the clinic at 1:00 a.m. on May 6, countless medical tests immediately began for the purpose of determining Gary’s overall health condition. He needed to be healthy enough and strong enough to endure such a procedure. Forty-eight hours later, while still sedated and ventilated, Gary was emergently listed for a double lung transplant. He was so ill-ridden with this disease that he went straight to the top of the list.

Five days later, Gary came out of sedation greeted by his wife and two children by his side. He was now on a life support called ECMO -- ECMO stands for extracorporeal membrane oxygenation. The ECMO machine pumps and oxygenates a patient's blood outside the body, allowing the heart and lungs to rest. A person can only survive on this machine for roughly six weeks before the body gives out. Luckily for Gary, he received the precious gift of a double lung transplant on May 16, 2013. If it weren’t for that complete stranger who made the decision to be an organ donor, Gary would not be sitting here with us today.

Life was great again for Gary and his family! He was back home by June 30, 2013 and breathing easy. He embraced life and began a new routine of daily exercise -- whether it be biking up to five miles per day; walking his trusty dog, Hector; or working out at the gym -- all things his former lungs weren’t allowing him to do. Gary also endured a new routine of anti-rejection medication -- taking some 24 pills per day to keep the lungs from rejecting. The Schmidt team of Gary and Deb quickly took hold of their “new normal” of sorting pills and 2-to-3-month follow-up trips to Cleveland. Life was great again for the Schmidt’s ... until May of 2015.

While vacationing in Florida and taking their daily 2-mile morning walk on the beach, Gary complained of a chest pain just 1/4 mile into the walk. After some convincing by his wife, they returned to their condo and Deb called the Cleveland Clinic. Once they returned home a few days later, they made the drive to Cleveland. Gary was found to have four blockages in his heart. The two main blockages were in the coronary artery where a stent could not be placed. It was determined that one of the anti-rejection medications may have been the cause of the blockage. This medication was removed from his regimen; nevertheless, Gary was hospitalized for an open heart double bypass.

The open heart surgery went well and was a success. However, two days prior to his anticipated discharge, Gary’s heart went into a-fibrillation (“Afib”), which caused his kidneys to shut down. Unfortunately, the fluid from his kidneys went to his lungs. Gary was in respiratory failure and had to be taken to the ICU. After 10 days in the ICU, Gary was released on oxygen back to the regular floor. He was now having dialysis every other day, and working his way back to a stronger Gary. There was hope that his kidneys would return to normal. The thought was that this was an acute injury to his kidneys, and once things resolved, the kidneys would resume normal function. Daily X-rays monitored the amount of fluid around his lungs. A few days later it was determined that a ”lung tap” was needed to remove fluid which remained around his right lung.

To make a very, very long story shorter ... complications occurred during this procedure that involved his lung, which sent Gary back to the ICU. This ICU stay turned into a 2-month nightmare! During the stay, Gary was placed in a medical coma; he was ventilated; he was even placed on ECMO again -- something that most people in Gary’s situation only see once in their lifetime. His wife stayed by his side every moment of every day -- going back to her apartment only for a few hours of sleep. It was the scariest time of both of their lives!

So many things were happening to Gary’s body that it was difficult for the Cleveland team to determine the cause. However, once the team figured out what was going on, Gary was taken off ECMO and began being weened off the ventilator. Being on a ventilator and in ICU for two months, he was extremely weak and had to endure a full month of daily rehab just to be able to walk up five steps to join Deb at the Cleveland apartment!

Needless to say, Gary persevered and did the work. He was able to come home to Watkins Glen on September 26, 2015 -- four months to-the-day after he was admitted for the open heart surgery. Unfortunately, his body had taken so many hits that his kidneys never recovered. Gary endured dialysis treatments three times per week for 2 1/2 years. He hated every minute of it. If you’ve never known anyone on dialysis, you’re fortunate. Dialysis literally sucks the life out of you! Yes, it keeps you alive -- but you’re not truly “living” -- you’re existing.

Gary knew he couldn’t continue living this way, so once he completed his one-year cardio rehab program, he decided to get evaluated to see if he could be placed on the kidney transplant list. He was ultimately listed in 3 states --- Ohio, Florida and New York. He was looking at anywhere from a 2-to-7 year wait for a deceased donor kidney. Sadly, the longest wait was in his home state of New York. You see, New York is ranked 51st out of 52 states and territories for the number of people registered on the organ donor registry, just one slot above Puerto Rico.

At each evaluation the Schmidt’s attended, the evaluating staff would inquire about any living donors who might be compatible for Gary. They explained that siblings were the best matches generally, but that children and unrelated people could also donate if compatible. Deb spoke up at each evaluation and said, “If I was a match, I would give Gary one of my kidneys in a heartbeat!” The last evaluation they attended was in January 2017. So now the wait began.

On May 22, 2017, Deb received a call from the Living Donor Kidney Transplant Coordinator at SUNY Upstate Medical in Syracuse. She was asked if she was serious about what she said about giving Gary a kidney if she could. “Of course I was,” she exclaimed. She could not believe the next thing she heard. She was told that Gary could get a kidney very soon if she was willing to give a kidney to a stranger. The only thing she had to do was go through the evaluation process to be sure she was healthy enough to do so. She was then told that an “altruistic” donor had come forward to donate a kidney to someone in need, and that Gary was a match! So because Deb said she “would if she could,” and then agreed to give a kidney to a stranger, they were looking at Gary first since this would take two people off the waiting list.

Deb passed her evaluation. So now, Gary and Deb Schmidt have another anniversary to celebrate ... September 19, 2017 -- the date they both had kidney surgery! And the story gets better. Subsequent to their recoveries, Deb and Gary got to meet their respective donor and recipient. You could say that everyone involved received the best early Christmas presents they could ever receive. On November 21, 2017, Gary met his donor, Jackie Bush-Roorda and was able to give her hugs of thanks; and Deb met her kidney recipient, Jamaica Johnson. Deb said it was the greatest feeling to be able to help someone who had gone through everything she witnessed her husband going through. There were lots of hugs and tears of joy that day!

If this story of organ donation touched your heart, perhaps you will spread this story in the spirit of organ donation awareness! To easily sign up for organ donation registration go to www.DonateLife.ny.gov/register.

Photos in text:

Top: Deb and Gary Schmidt stand next to Assemblyman Phil Palmesano, right, who addressed the Watkins-Montour Rotary Club on Thursday, April 19 about the need for organ donors. He introduced the Schmidts to the club as the living embodiment of the importance of the donor program.

Bottom: Assemblyman Palmesano, at that Rotary Club luncheon, presented Deb Schmidt with a New York State medal honoring her donation of one of her kidneys.