|
Steve Jones poses with his son, |
Just a few weeks before the Transplant Olympics in June of 2002, Steve Jones was physically and mentally pumped. He was confident he could beat the record in golf and in the softball throw. But an overzealous workout with a weight-training expanding butterfly device left him with a cracked sternum, and needing surgery. He would attend the games—but only as a spectator.
Steve’s heart saga began in February 1997, when he was just 37. Steve had a simple winter cold that did not improve. With no history of heart disease, Steve was frightened when his doctor said, “You need to see a cardiologist tomorrow.” Steve was referred to Hopkins cardiologist Ed Kasper, M.D.
Dr. Kasper’s diagnosis was “dilated cardiomyopathy, with an enlarged left ventricle.” Steve’s condition was “idiopathic,” or from an unknown source. Stunned, Steve listened incredulously as Dr. Kasper told him that the condition is serious and can cause sudden death.
The plan was to treat Steve medically for as long as possible as Steve made lifestyle changes—no salt, limited activities. At the time, Steve’s son, Stephen, was just a year old. Little Stephen arrived 11 weeks prematurely and was hospitalized for 9 weeks before his parents could finally take him home. “We had just been through that ordeal, and now this,” says Steve. In June 1997, Dr. Kasper made Steve wear a Holter monitor, which measures heart pacing. After reviewing the first day’s results, Dr. Kasper told Steve to go directly to the hospital. Because the arrhythmias (irregular heartbeats) were so alarming, Dr. Kasper put Steve on the transplant list immediately. He was an inpatient for five days and monitored with medication.
Emotionally, things were getting tougher for Steve. It was summer, his busiest time. Part of his job involved running a junior golf camp. He longed to play with his son the way fathers should. And, of course the situation was extremely difficult on his wife Barbara. “I made the best of a bad situation,” continues Steve. Things began to turn around, and after his new medication proved successful, Steve was removed from the waiting list. He even took a more demanding job.
His good health was short lived. In January of 1999, Steve blacked out while answering the phone. He was babysitting, and his three-year-old did not realize what had happened. When Steve regained consciousness, he called 911. Steve needed a pacemaker and was placed on the transplant list again.
But the device was not reliable, and between March and July of 1999, the defibrillator fired off six times. In other words, Steve blacked out before the signal to the device kicked in and corrected the problem. One of those times he fainted in the driveway. Another time he was with his son on the golf course when he lost consciousness. “I could tell when something was wrong—I felt the skipped beats and heard the device beep. I would stop dead in my tracks and wait till it passed.” Luckily, in all of those instances, he was either with someone who could help or, when he “came to,” he was able to call 911.
By now Steve was carrying a pager, hoping for a phone call announcing that his donor heart had arrived. His condition worsening, Steve was admitted to Hopkins on October 25, 1999 to await his new heart. The call came while Steve was on Nelson 5 with an IV drip at 2 a.m. on November 7. The surgery began at 6 a.m. Steve vividly recalls the scene when he awoke from anesthesia: “I had wires everywhere and couldn’t talk. I felt blood surging everywhere in my body, the opposite of what I was feeling before. I was very weak, but not weak enough to notice that there were no sounds from the monitor. My heart was in perfect rhythm.”
He was released just a couple of weeks later and resumed working four months after that. In May 2001, Steve had an epiphany that he wanted to put all his energy into being a “stay-at-home dad.” He reasoned that he had a second chance at life, and there was more to life than “making sure Mrs. Smith had the argyle golf sweater she ordered.”
Now he goes on field trips with his son’s first grade class and helps in the classroom. His transplant experience propelled Steve into the realm of advocacy. Active in promoting organ donation awareness and the Transplant Olympics, in which he was unable to participate because of his sternum injury, Steve feels indebted to his young donor and his bereaved family.
Steve wrote a thank you letter to his unknown donor in early December 1999 and mailed it to the Transplant Resource Center (TRC) of Maryland. The TRC staff called him to inform him that the donor family wanted to meet with him.
Before his tragic death on November 5 in an automobile accident, Chad Ruth, 21, announced his wishes to be an organ donor should anything happen to him. Chad was about to receive his helicopter license and was in perfect health.
Six months post transplant, Steve met Georgette Ruth and her other son Sean. “It was the fastest 3-1/2 hours I ever spent with anyone,” reflects Steve. “Knowing that some good came of Chad’s death was quite comforting to the family,” he adds. It was to be the first of many other meetings. Tragically, Georgette suffered another loss on 9/11—her ex-husband died in the Pentagon attack.
Georgette stays in touch with several other recipients of Chad’s organs. She says the contact helps her cope with the loss: “Chad can never come back, but he’s still not gone. His spirit is there, living on in other people.” Chad’s organs went to five different people.
Georgette and Steve speak on the topic of organ donation regularly, and Georgette was appointed to the Governor’s Council on Organ Donor Awareness.
An OR nurse for 30 years, Georgette had never given much thought to organ transplantation until her son’s wishes became known. But now she thinks of little else. She considers herself blessed to have a new extended family in Steve, his wife and son. The feeling is mutual. Says Steve, “I wouldn’t be here if it weren’t for Chad. But the added bonus is that I have Georgette and Sean in my life.”
As Steve prepares for the 2004 games, he is bolstered by all this support. No doubt he’ll think twice about using the butterfly apparatus this time to work out, so that he can participate in the games next year.
Click here for more information About Team Maryland and the Transplant Olympics
