Wednesday, May 2, 2001
The University Daily Kansan: GRADUATION ISSUE
Section B · Page 3
Transplantsurvivor
Disease doesn't keep student from graduating
By Paul Smith
Jeff Leone didn't know who saved his life.
Just before his transplant operation, doctors said the kidney had come from a 23-year-old man who died in an accident. That's all they would say.
Special to the Kansan
Seven hours later, the anesthetic faded sufficiently for Leone to look up as he was wheeled from surgery and
— despite the pain — give a thumbs up to his family and friends gathered in the hallway.
After rapid deterioration of his kidney function, the Olathe graduate student in education endured four years of medical hardships, near-death experiences and frustration to pull through with his family intact and a diploma awaiting him.
A grim forecast
A water skiing incident in 1985, seemingly innocuous at the time, left
the 23-year-old Leone with a bruised kidney. But blood in his urine persisted for months instead of days, prompting tests and the diagnosis that Leone suffered from Berger's disease, a degenerative kidney disease.
"At that time they said it would be 20 to 25 years before I would reach end-stage renal failure and need a transplant or dialysis," Lee said. "But that prediction was slightly off. It only took 11 years before I was in renal failure."
The doctors were not optimistic about Leone's condition, saying that only 10 percent of those with the disease avoid end-stage renal failure.
"They just woofly underestimated the time it would take to reach that point," Leone said.
Despite the grim forecast, Leone maintained his active lifestyle and took uncycling.
While training for his second 150 mile ride in 1996, Leone knew some
thing was wrong. In August, a few weeks before the ride, he should have been in peak physical condition. Yet he found himself winded and struggling up hills.
Leone ignored his training experiences and participated in the ride, a fund-raiser for multiple sclerosis research. He experienced no problems during the first day—a 100-mile stretch. Halfway through the second day, he "hit the wall," and his body gave out.
Leone stopped at the first of a series of three rest stops. He took at least a half-hour to recover at each stop after riding the eight miles in between, much longer than usual. He thought seriously of asking a Support and Gear vehicle to carry him the remaining 25 miles.
Leone managed to finish the ride on his own. Six weeks later, he was hospitalized for 10 days.
One hardship after another
The doctors offered no clear reason
Jeff Leone, Olathe graduate student in education, endured four years of medical hardships after rapid loss of kidney function before returning to health and being able to again enjoy recreational sports, such as bicycling. Leone will graduate in May. Photo by Joshua Richards/KANSAN
for the alarming deterioration of Leone's kidney function. Dehydration from cycling and high blood pressure were cited as possible factors.
With less than 15 percent kidney function the point at which the toxins begin to affect the body - Leone started on dialysis, the procedure of removing toxins and fluids from the body by filtering bodily fluids through a machine since the body produces little urine.
Jeff Leone, Olathe graduate student, has competed in several amateur bicycling races since his transplant. Contributed photo
His first dialysis was an emergency procedure performed by Rick Muther, a Kansas City, Mo., physician. It was facilitated by a temporary catheter inserted underneath the collar bone into an artery above the heart. A more permanent catheter was implanted in his abdomen to allow Leone to dialyze with a machine at home, a process called peritoneal dialysis.
The peritoneal dialysis frustrated Leone. The machine, designed to inject and drain toxin-leaching fluids while the patient sleeps, would sound an alarm if Leone pinched off a tube during the night. Sometimes the machine would cause cramps.
"It [the machine] thinks it has more to drain and it doesn't, and so it starts really cramping your inside," Leone said. "That was not a fun period in my life, and that happened to be my first semester at KU."
At the same time, the peritoneal dialysis was not sufficiently cleaning Leone's system, causing nausea and vomiting. Two weeks after his first GI tract bleed, Leone again expelled blood.
The next semester, in April of 1997,
Leone was hospitalized for gastrointestinal bleeding. Doctors could not pinpoint the cause.
Earlier disqualifications of relatives for kidney donations were not so disappointing to Leone after doctors removed his cancer.
An ambulance rushed Leone to the hospital; he had lost a lot of blood. However, Leone insisted on being taken to Muther at Research Medical Center in Kansas City, Mo., instead of a closer hospital.
"It was out of my hands in that ambulance," Leone said. He lay on his back on a stretcher, as paramedics monitored his vital signs and hooked him to an IV. He was unsure whether he would live through the night.
"That was probably the weirdest feeling in my life. ... But I wasn't scared, it was like resignation almost," he said.
During the surgery, the doctors discovered the cause of the GI tract bleeding: cancer in his small intestine.
"I went under anesthesia thinking I was just getting this catheter removed and another one placed," Leone said, "and I came out with a small bowel resection — one foot of my small intestine removed and sown back together."
Up to that moment, Leone had hoped to receive a transplant soon. He didn't know if he could cope with hemodialysis even for two years, at four hours per treatment three times each week.
Fearing a recurrence of the cancer coupled with the number of blood transfusions Leone received — eight units alone in the second hospitalization — the doctors said he could not be considered for a transplant for two to five years.
Dark days
If this brother had qualified for a kidney transplant scheduled in January of 1997, the drugs prescribed to suppress the immune system — so the body accepts the organ — would have facilitated the spreading of the then undetected cancer.
"Then I stopped questioning what I call universal order." Lee said. "I was like 'OK, I apologize. There was a reason my brother struck out."
At the same time, Leone experienced a brief depression. He feared the cancer would recur and that he might prove permanently ineligible for a transplant, thus requiring dialysis for the rest of his life.
The atmosphere in the hemodialysis clinic was not uplifting. Leone felt out of his element there, an active cyclist pinned to a machine, surrounded by elderly patients ineligible for transplants.
"My cancer—I was pretty lucky: no chemotherapy, no radiation treatments," he said. "It was completely removed surgically. Within a month of starting long-term hemodialysis, I really started counting my blessings."
The phone call
When the phone rang at midnight on Dec. 18, 1999. Leone knew this was the call he had anticipated every day of his two years and seven months on medialysis. He was wide awake instantly, initially in shock and then grasping for the phone.
The transplant coordinator on the line told Leone
that a transplant operation could be scheduled for that afternoon, provided the kidney passed one more test. The coordinator said to get some sleep, that she would call back in six hours.
Leone and his wife Robyn couldn't sleep; they were so happy they cried. They tried not to wake their 4-year-old daughter, Jordan, keeping the volume on the TV low as they killed time watching tapes of Fraiser and ER.
Leone was in good spirits after waking up from his transplant operation. Contributed photo
"We just kept looking at each other, grinning ear to ear," Leen said. They knew that the next day, he would have a kidney.
Twelve hours later, Leone was wheeled out of surgery and the operation was deemed a success. However, that initial judgment may have come too soon.
After two days, Leone's body began rejecting the new kidney and doctors increased the dosage of immuno-suppression drugs. The risk of rejection slowly died down, and Leone was
released from the hospital 12 days after surgery.
"When I got out of the hospital Dec. 30 and I had a few weeks before school started again, I thought 'Man, I'm going to get through this without missing a beat,'" Leone said. "I was really stoked."
However, persistent fluid accumulation and a mysterious sternum inflammation knocked Leone out of school for the first time during his graduate work in the Spring 2000 semester, garnering him two incompletes at the Edwards Campus.
The kidney gets a name
This final semester, Leone has been healthy enough to take on 12 credit hours, while finishing those incompletes—for a total of 18 hours.
Law prohibits contact between the donor family and recipient for at least one year. All contact must also be initiated by the donor family. Leone assumed a letter would constitute prohibited contact, and he was stunned when the organ bank forwarded him a letter from the donor's mother on May 4, 2000 - five months
after the transplant.
"My wife and I opened it and just bawled immediately," Leone said. "All of a sudden my kidney had a name."
Lena, the donor's mother, described her son as someone who liked to help people, and that she knew Christopher had wanted to donate — which is why the family allow
doctors to take the organs for transplant.
"Here I am thriving instead of just surviving because of heroes like that who make those kinds of decisions in probably the toughest moment of their life," Leone said.
After the second round of letters with the mother, Leone received notification last week that Lena filed papers to allow direct, personal contact between them.
"I want this to be on her terms," Leone said, realizing the need to need him his enthusiasm for meeting Lena "I would love to have her at my graduation, to honor her and Christopher."
"Words can't really express my gratitude for what she's done for me and my family. In person, words may not be needed to express that. She may not know how much she has saved my life."
- Edited by Brandy Straw
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