Cascades resident feels the shortage of organ donors in Virginia
By Elizabeth Coe
Right now in Virginia, more than 2,500 people are waiting for a lifesaving organ transplant.
About 300 of those people are waiting for a new liver.
One of them is Tom Butler.
Butler, 48, has been living with the knowledge that his liver is failing for nine years.
"It's always in the back of my mind," the Cascades resident said. "But with time, you learn to deal with it. What else can you do?"
Butler needs a liver transplant or he will not survive.
Each week, an average of three Virginians die while waiting for an organ transplant, said Dena Reynolds, spokeswoman for LifeNet Health, which runs the Web site www.save7lives.org.
The site (named for the fact that each donor can save at least seven lives) is an easy, quick way for anyone in Virginia to sign up to be an organ donor. This also can be done through the Department of Motor Vehicles.
"There is a critical shortage of organs in Virginia and across the country," Reynolds said. "There just aren't enough people signed up."
Reynolds said this is nothing new; however, things do seem to be improving.
Over the last five years, the number of donors has gone up a little bit, Reynolds said. Since launching in 2003, www.save7lives.org has helped many families find a match for their loved one.
Butler is hoping he will be as lucky. He suffers from primary sclerosing cholangitis, an extremely rare disease that causes inflammation in the bile ducts of the liver.
There is no cure for the disease. Butler's only hope is a liver transplant.
To try to encourage Loudoun residents to become organ donors, April was named Organ and Tissue Donation Awareness Month by the Board of Supervisors.
"It's an awareness thing to try to get the word out that you're worth something even after you die," said Keith Nusbaum, assistant to Chairman Scott York (I-at large).
Butler's Doctors first discovered something was wrong during a routine blood test that revealed Butler's liver enzymes were abnormal.
It took several specialists, hundreds of tests and two years for Butler to be diagnosed. PSC has no known cause or cure, but its progression can be slowed with medication.
Having the disease puts Butler at a greater risk for cancer, and it caused him to develop Crohn's disease, an inflammation of the gastrointestinal tract.
He is tired all the time, he suffers from anemia, his platelets are low and his white blood cell count is down. He is also losing bone density.
Still, Butler's situation wasn't critical enough to put him on the organ waiting list until about a year ago.
Now, he is waiting for a liver, but he has no way of knowing how high he is on the list.
"There is much more demand than there is supply," Butler said. "I'm not sure why more people don't [sign up to be donors]."
Butler said there is no reason not to be a donor.
"One big misconception is that the typical person on the organ list is on bed rest," he said. "It's not hopeless cases. These people have had productive lives, and they still can, if they're given the chance."
One Loudoun man who got a second chance at life is Arlyn Black, of Sterling.
Fourteen years ago, Black learned he had liver sclerosis, which causes scarring and the inability of the liver to function.
He was told he would live five years without a transplant.
Twelve years ago, after waiting for a year on the organ donor list, Black got a call notifying him a match for his liver had been found.
"To make the decision to get on the wait list was an easy one," he said. "To understand what is involved in a transplant was more difficult. Somebody dies to give you a life."
In Black's case, it was a 47-year-old woman who gave her organs.
"When you choose to become a donor, that is the greatest gift you could give," he said. "I treat it with the utmost respect."
For Butler, the best option to save his liver may be a living transplant.
The liver is the only organ in the body that can regenerate, Butler said.
With a live liver transplant, a person donates a portion of their liver, and both the donor and recipient livers regenerate. The process takes four to six weeks, and has a high success rate, Butler said.
Living donors must be a match with the recipient for blood type and must be in good health.
In Butler's case, several relatives and members of his church, Galilee United Methodist in Sterling, have come forward to be tested.
Butler cannot know who is tested. This is so doctors can ensure the recipient has not bribed the donor in any way.
Butler has heard, however, that a likely match has been found and someone is going through the final stages of testing now.
If all goes well, Butler said, the transplant operation could take place as soon as June.
"I am optimistic," he said. "I think that's due to my faith. I don't know how somebody could get through this without faith."
For more information on Butler's situation, visit his site, www.tomneedsaliver.us.
Contact the reporter at ecoe@timespapers.com