By Lisa Singleton-Rickman | Times Daily, Florence Alabama
For the past three years, Jeff Malone has spent 12 hours a week hooked to a machine that does the work of his kidneys.
The procedure is called dialysis, and while it is a life necessity for the 48-year-old Spruce Pine resident, a new kidney would be the answer to his problem.
But kidneys are difficult to come by. The average wait is five to eight years.
For Malone, it would represent his third transplant.
Three years into the wait, his name is on lists at University of Alabama-Birmingham and Vanderbilt University hospitals.
His kidneys failed at age 35. In 1998, his wife, Diane, donated one of her kidneys. His body rejected it three years later. In 2004, a friend donated a kidney. By 2008, that kidney had shut down.
Doctors never pinpointed the cause of his original kidney disease, but they do know that Malone's anti-rejection drugs poisoned the donor kidneys, causing them to fail. Malone said if he is fortunate enough to get a third shot at a kidney, the anti-rejection drugs will be changed and doctors assure him rejection because of the drugs won't happen again.
Malone, a self-described “optimistic person by nature” is quick to point out he's waiting to live, not waiting to die.
“I want to get back some quality of life,” Malone said. “I'm 48 years old and I want to get back to work and live without being so confined. Nobody knows how stressful dialysis is. I'm told that four hours on the machine is like running a full marathon (26.2 miles). I've never run a marathon. I think (dialysis) just may be worse.”
Malone has always worked in construction and took leave when his health began deteriorating and dialysis began. He said officials with the company he worked for, CS Beattey Construction in Birmingham, have been supportive and assured him he can return to work after he gets a new kidney.
“I have absolutely no kidney function,” Malone said. “Anything I drink stays with me until I have dialysis. There's a lot I can't eat or drink. I'm a big guy. I've always worked hard and drank lots of water and milk and never drank alcohol or did stuff that was bad for my body. There's nothing I can pinpoint that would have caused my kidneys to fail. To think that I could die waiting for a kidney is almost too much.”
Dialysis puts stress on the heart. In Malone's case, he also has developed shoulder and bone issues.
“Dialysis affects everyone differently,” he said.
Marty Rich, who heads the Shoals chapter of the Alabama Kidney Foundation, said the group is growing, and education is the primary goal of its 30-plus members. For Rich, raising awareness about kidney donations within the community is vital.
“It has come so far, even in the few years since Jeff's last transplant,” said Rich, who 13 years ago had a kidney transplant and is doing well. “It's not the same invasive procedure it once was. It's laparoscopic now and the donor recovers much quicker. If there's a living related donor, that the best-case scenario.”
Rich's group is participating in a walk-a-thon for the Alabama Kidney Foundation in Huntsville on April 9. All money raised stays in the community, she said.
April is Organ Donor Awareness Month. Rich said many people don't realize how easy it is to donate, from the blood-typing procedure to the actual kidney removal.
“It doesn't cost the donor a penny,” she said.
Also, once a kidney is donated, that individual moves to the top of the kidney donation waiting list, in the event he or she should ever need a transplant.
“People live long, productive lives after kidney donation,” Rich said. “My sister donated for me and she has done great. I would have never put her at risk, never have let her donate, if it meant her life would be cut short.”
Malone's wife, Diane, said she's never had a problem with her remaining kidney since her donation 13 years ago.
“If I could give him another one, I would in a heartbeat,” she said. “It's hard to watch someone you love suffer like this. I just wish people understood what a gift this is for a person whose life depends on getting that kidney because it's so easy to be tested and even to donate.”
Jackie Whatley, procurement transplant coordinator at Kirklin Clinic in Birmingham, said donation is easier than ever, a much less invasive procedure than a decade ago. As for the patient receiving the transplant, there have been great medical strides made as well, with improvement in anti-rejection drugs and the procurement procedure itself.
“From the time the kidney comes available, it needs to be transplanted within 36 hours,” she said. “The kidney can now remain on a perfusion machine for three days and it can actually improve the kidney function. So far, the kidney is the only organ that such equipment has been approved for, but strides are being made all the time.”
In Malone's case, a third match will be more difficult because with every transplant, more antibodies build. Therefore, it's paramount that blood relatives be tested.
Part of the education process is knowing where to seek information. Rich said there are ways to speed up the donor process through computer searches, especially social networking sites.
Malone recently found a site, Matchingdonors.com, that assists those in need of kidney transplantation by finding a match.
“It's a legitimate company that charges a one-time fee, about $600, and conducts the search, coordinates the blood work and gets the process set up,” Malone said. “The company I worked for offered to help with the expense of it. They've been more than generous with me. I'm hopeful, for the first time, that this could work.”
Once the donor and patient are confirmed as a match, the company's role is over. Malone's blood is Type A.
Rich said it's becoming more common for people to secure organs by the Internet, referring to a 73-year-old woman who reportedly got a kidney from craigslist.
“You can talk the ethics of it all day, but until you're faced with death because of a failing organ, you can't really say what you'd do,” Rich said.
Whatley said it's illegal to buy and sell organs in the U.S. There's been an increase in recent years of people going out of the country for organs.
Still, organ transplant centers such as UAB stay abreast of legitimate donation companies operating online and work in conjunction with them whenever possible.
As for Malone, he said he constantly updates his Facebook page and is encouraged by Vanderbilt officials to keep his information public through such sites.
“When you're desperate like I am, you take advantage of every opportunity to get your story out there,” he said. “I'm thankful we have such a far-reaching (mechanism). My hope is that it helps me live.”