Imagine waiting seven years for a call that could promise new life.
About 6,000 people in the Philadelphia tri-state area are waiting for an organ transplant. The network of doctors, nurses and family members who wait with them is even larger.
At Temple University Hospital, when a donor heart becomes available, transplant nurse Liz Kerr often gets the call.
“Typically it’s very late at night, so my phone is always charged up,” Kerr said.
Those late night calls are never a bother, Kerr said, because when her phone rings, it’s news for someone she knows personally. She chose a special ringtone that “sounds like Christmas.”
“I purposely made it something joyous so that it would be a happy moment, and it is,” Kerr said.
A kidney, a lung, a liver—depending on the organ—how long and where—you wait is different.
Newer drugs and better medicines let most heart patients do their time at home, but that wasn’t the rule 10 years ago.
“They would have a wing in the hospital dedicated to patients awaiting transplantation,” said Temple University heart failure physician Rene Alvarez. “Literally, they would live there six to nine months, that’s completely changed.”
Today, medical staffers monitor their patients using cells phones and a suite of implanted, mini devices that assist an ailing heart or even give it a kick-start, if there’s a problem.
“It’s like having a portable emergency room in your chest,” Alvarez said.
The size of a donated heart matters—and blood type is a factor in the wait time, but Alvarez said, in this region, most heart-failure patients get a transplant in about three months.
“They go from an inability to do almost anything to a normal life afterwards. When patients are waiting, that’s what we try to keep them focused on,” he said.
Waiting away from home
Lori Smith’s husband, Rawling Smith, needs a second liver transplant—and a new kidney.
Rawling’s battle began years ago with hepatitis C and liver cancer. The couple saw each other through a first liver transplant that eventually failed.
In the latest battle, Rawling has been at Hahnemann Hospital, unable to leave his bed since early February. For seven or eight hours each day, Lori is with him.
“You’re on automatic pilot. Right now this is my life, get up, work out, spend the day here, ask questions, come home, have something to eat, and go to bed,” she said.
For now that bed is 130 miles from her real home in Lackawanna County, Pa. After her day at the hospital in Philadelphia, Lori comes back to the Gift of Life Family House. The rooms are cheap, just $40 a night. Parking is free and there’s a hot, cooked meal at 6 p.m. every night.
“You know, you feel so all alone, but then when you finally sit down and start talking to someone, it’s like, oh wow, they’re going through the same thing,” she said.
Doing time at dialysis
The vast majority of people who need an organ need a kidney. Their wait times are the longest, and often stretch out for years.
Sixty-one-year-old North Philadelphia resident Edward Spiller has been waiting for a kidney for more than seven years. There were earlier signs that he was very sick, but Spiller said he didn’t take much notice until his symptoms kept him from going to work one morning in September 2006.
Spiller said his feet were swollen to the size of “elephant feet,” so he turned his car around and headed to the hospital. What he didn’t know then was that when the kidneys stop working, fluid gets trapped in the body.
Spiller had been diagnosed with diabetes 10 years earlier, and this time doctors said the disease had done permanent damage.
“They came and said Mr. Spiller your kidney failed – both of them. They told me I’d have to start going to dialysis,” he said.
Since then, every Monday, Wednesday and Friday, Spiller sits while a machine filters his blood.
He was a warehouse manager once, but had to quit his job because his dialysis can be so physically exhausting. On dialysis days, walking just a few blocks to the bus stop wears him out, he said.
Each session lasts about five hours and he passes the time watching Jerry Springer or fishing shows.
“Seems like you are there forever unless TNT has a good movie on. The last hour seems like it’s never going to come,” Spiller said.
The clinic has 16 chairs. For three shifts a day, every seat is filled.
“That’s 48 people in there, six days a week,” Spiller said. “I’m not special, I’m just another patient waiting for my turn.”
Spiller is listed with the kidney transplant program at Einstein Healthcare Network.
Before this year, he’d never gotten a call, then suddenly in the last month there’ve been a dozen or so near misses. Sometimes the organ was a match, but every time the kidney went to someone higher on the list.
Those near misses may be the hardest part of the wait so far, but Spiller says he doesn’t stay down too long.
“I remember, I’m the one who ate all the cheeseburgers and the steaks, I’m the one who didn’t go to the doctor and take care of myself, you accept that reality,” he said.
He keeps his cell phone on–except when he’s in church.
“If it’s meant for me to get a kidney, the Lord gonna make sure I’m there in time to get it,” Spiller said.
Edward Spiller received a kidney transplant on Tuesday, March 4.
Four days after surgery, he was feeling groggy, connected to many wires but smiling. A newly transplanted organ can be sluggish at first, but Spiller’s kidney was already working fine.
The new organ comes from a women in her 40s, who died after an asthma attack. He’s grateful, and Spiller said he realized he was waiting for “freedom” as well as a new kidney.
“I’m sore as hell, but I’ll be alright,” he said. “They say I’m healing fast.”
He’s looking forward to traveling with his brother and maybe even going salmon fishing in Canada.
It will take lots of medication to keep the new kidney healthy, but Spiller gets to leave his dialysis chair behind.
“That’s a blessing,” Spiller said. “But it won’t be empty that long.”
More than 5,000 other people in the Philadelphia tri-state region are waiting for a kidney, according to the Gift of Life Donor Program.