Staunton News Leader
Published 12:30 p.m. UTC Jul 26, 2018
STAUNTON – It all comes down to a phone call and four hours for Tom Davis.
From the moment a heart is removed from an organ donor, the transplant team at UVA has four hours to get it in his chest and beating.
“I could get a phone call in five minutes,” says Davis. “And then you’ve got four hours to get to Charlottesville.”
Unable to travel outside of this time parameter, he has to call his doctor to get the okay every time he and his wife Gail want to leave town. Recently, they were able to visit Washington, D.C., but anything further is out of the question.
“I want to ride my bike again. I want to hike,” Davis says after he gets a new heart. “That stuff is out of my reach now.”
It's been years since Davis went for a bike ride. Originally from Chicago, Davis retired in 2013 after managing Lake County’s government public access channel. The most fun he ever had at a job, he says, where he was constantly learning. Married 31 years this October, they moved to Staunton because of the open space and mountains.
Sitting next to each other, Davis smiles and talks about the fresh air, exercise and the feeling of being out on your bike in the middle of the woods. Gail looks at him and remarks about how he used to be so active on his speed and mountain bikes.
“Then things got complicated,” he says.
In 2009, Davis was diagnosed with colorectal cancer. After two rounds of chemotherapy, radiation and surgeries, the cancer was gone, but almost immediately afterwards, he started having symptoms of congestive heart failure.
His doctor implanted a pacemaker, and he says he felt fine until the first time it went off. Davis was out riding his bike and stopped to get a drink from his water bottle when all of sudden, “Kaboom!”
“When it goes off, some people say it’s like getting kicked in the chest by a mule. I thought, either I got struck by lightning or the pacemaker went off.”
It was clear blue sky, so he knew it must have been the pacemaker. Because his car was parked a few miles away, he got back on his bike, rode to his car and then drove straight to the doctor’s office.
“I hadn’t felt anything. I hadn’t felt winded, tired, nothing. Just bam, out of the clear blue.”
The next time it went off, he noticed something was wrong.
“I was suffering. Not breathing well. Not having enough energy to walk around.”
As time went on, he started exhibiting more symptoms of advancing heart failure, and it was recommended that he go to UVA for a transplant evaluation in June 2017.
“They were unpleasantly surprised how poor my heart function was, and that was when they put in the ventricular assist device," he says.
A left ventricular assist device, or LVAD, is an electromechanical device for assisting cardiac circulation, used to replace the function of a failing heart.
“It’s attached to you. You have to have it all the time. You have to take it in the shower. You have to sleep with it. There’s no time when you can take it off.”
Davis also has to carry a spare controller and spare batteries, along with instructions on how to use the device in a backpack that adds about 15 pounds in equipment he must have on his body at all times.
“They really want me to be with him all the time,” says Gail, who is sitting beside him. “It’s really hard to do.”
If Davis were to pass out somewhere, he says EMT’s would have to read the instructions to figure out how to change the controller.
“He has no pulse and no blood pressure,” adds Gail. “That’s the other weird thing about it. If he were to pass out, and someone tried to take his pulse, they would think he was dead.”
Without the LVAD, Davis would be oxygen dependent, immobile with a risk of multi-organ failure.
“Thing is, I’m perfectly healthy except for my heart,” he sighs.
According to UVA Heart and Vascular Center, one in five people will develop heart failure. Considered a pioneer for use of LVADs and the only hospital in the state that performs pediatric heart transplants, UVA's transplant clinic has performed more than 300 transplants, 30 of them on children. Their team coordinates comprehensive care until a heart becomes available, a program that won two awards from the American Heart Association for quality and effectiveness of treatment.
“They will charter an airplane, take a helicopter,” says Gail about the heart transplant team. “The fastest way to get here and back.”
Davis’ experience with UVA has been very positive. “They know you,” he says. “They’re very good, responsive, available.”
According to UVA Health System’s information on waiting for an organ, the wait time for a heart in our region is one to three years. About 20-25% of people on the wait list die while waiting for the transplant. Some patients become so sick that they can no longer tolerate the stress of surgery and may be removed from the list, a difficult decision for the patient and transplant team.
“They have to get permission from the family to donate the heart,” explains Gail. "The person has to be declared brain dead, and they keep the body on artificial life support to keep the organs viable."
Davis has been on the UVA wait list for one year and feels hopeful the transplant will happen. He says he can’t wait to give up his handicap sticker.
“I used to think it was a privilege not to be able to park in those places.”
Gail hopes his story will encourage people to talk to their families to make their wishes known.
“Loved ones don’t know what they would have wanted, and it puts the family in a very stressful and uncomfortable situation. Do you want to be an organ donor? Just tell them what your feelings are to ease the burden.”
For Davis, his treatment, called a bridge to transplant, is temporary.
“It’s going to keep him healthy until a heart, God willing, becomes available,” says Gail.
For others who are not good candidates for a heart transplant, this form of treatment, called destination therapy, is permanent.
“This is what’s going to keep you alive and relatively healthy for the rest of your life,” explains Davis.
Although recovery takes six to nine months, requires lifetime medication with frequent follow-up visits to the doctor, along with knowing there is a possibility of organ rejection, Davis can’t wait for that phone call.
He can’t wait to ride his bike and get back to the sweet life.
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Reporter Monique Calello can be reached at [email protected] Follow her on Twitter @moniquecalello.