BLACKSBURG – Every day, people die because they can't get an organ transplant. More than 14,000 people across the U.S. are waiting on a liver transplant, and nearly 200 are right here in Virginia.
Bethany Sandone was one of them. One week. That's all it took for her life to change forever.
"It was a miracle. Seriously," she said as we talked in her apartment.
The Virginia Tech student worked on a project on a Monday night, and then started feeling sick.
"Wednesday came around, I started to feel nauseous and thought maybe I had the stomach bug," she said.
Thursday, her roommates took her to Lewis Gale Hospital Montgomery, where doctors ran tests for alcohol and drugs. Sandone knew that wasn't what it was. The last thing she remembers is being put into a helicopter to be flown to VCU Health in Richmond.
"It was obvious that she was in some very deep trouble. She had something called acute liver failure. We only see 2,000 or 3,000 cases in the nation per year. It has a terrible mortality rate: 25 percent get transplanted, and a third of patients actually don't make it," said Dr. R. Todd Stravitz, of the VCU Health division of gastroenterology.
"The decision for transplant was pretty cut and dry. Without a liver transplant, she wasn't going to make it. The question in these cases is how quickly an organ offer can come through, because if you wait too long and the patient gets any infection or doesn't do well in terms of brain swelling, then it can be too late sometimes," said Dr. Amit Sharma, of VCU Health transplant surgery.
Sandone's liver was failing, and she was one day from death without an organ donor.
"It doesn't feel real sometimes because I am so healthy and everything is so normal," she said.
It's been more than a year since the life-saving surgery. A year of days in the hospital and a year away from Virginia Tech. Her scars had to heal. She took 40 pills a day to make sure her body didn't reject the new liver.
"It was a struggle to take all of these. I would try with yogurt, applesauce, a thicker drink," she explained as she showed us all her old pill bottles.
Now, she's down to five pills every morning and night for the rest of her life. She's back in school and on track to graduate in December, and is writing a letter to her donor's family to thank them. Thinking about everything she's been through is emotional.
"Every emotion just floods back. It's like you're scared, and then you're like so happy, and then it's just... It's a lot," she said with tears in her eyes.
A single organ, eye or tissue donor can save the life or help heal more than 75 people. But 22 people die every day because the organ they need isn't available.
"We still have a lot to do. In the state of Virginia, about 40 percent of the people are not on the (organ donor) registry," said Robbie Key, LifeNet hospital development coordinator for the western region.
Key donated a kidney to her daughter, who had a rare autoimmune disease. Key said 24 people could have been organ donors at Carilion last year, but only 15 were.
Making the decision before you have to can spare your family pain.
"If they're not on the registry we have to approach people when it is the worst day of their life. That's very hard for them to reason and make that decision," said Key.
But that decision means life for people like Sandone.
"If you can help somebody once you're gone, why wouldn't you?" she says.
If you live in Virginia, you can register to be a donor through the DMV when getting or renewing your driver's license or ID Card or you can do it online by clicking here.
Frequently asked questions from LifeNet Health:
Am I too old or unhealthy to donate?
No. Anyone can be considered for donation. At the time of death, donation program professionals will review your medical and behavioral history to determine if you are a candidate for donation. The criteria for donation changes constantly in order to try and meet the critical shortage for those on the waiting list.
Do famous or wealthy people get transplants quicker?
No. The process of matching organs with potential recipients is administered through the Organ Procurement Transplant Network (OPTN) administered by the United Network for Organ Sharing (UNOS). Transplant centers determine the criteria for listing of potential recipients for transplant organs. The UNOS computerized system determines the sequence in which organs are allocated based on various medical and geographical criteria. The computer does not prioritize a recipient based on who they are.
Is donation against my religion?
All major religions support organ, eye and tissue donation and consider donation the greatest gift one can give. Transplantation is consistent with the life-preserving traditions of these faiths.
Will my family still have the final decision?
No. Your decision to be a donor will be honored. The Code of Virginia states that family permission is not required when you have documented your decision to donate. While it is still helpful for family members to know what you want, their permission will be sought only if your decision is not registered, either through the DMV or online at DonateLifeVirginia.org. Those under the age of 18 can indicate their wishes to donate, but parents and guardians by law must make that decision.
Does my family have to pay for the donation?
No. Donation costs nothing for the donor or the donor's family. While the family will receive a hospital bill for any lifesaving efforts that took place for their family loved one, if that patient dies and becomes a donor, all charges related to the donation process are billed to the organ, eye or tissue recovery agency.
What about funeral arrangements?
There can be an open casket funeral, viewing or other standard memorial after donation. The donor is treated with utmost respect and dignity. The recovery of organs and tissues is conducted under standard, sterile conditions in an operating room, and the body is fully reconstructed once organs and tissues are recovered. The family will make the funeral arrangements in the usual fashion. All funeral costs remain the responsibility of the family.
Are TV and movie stories about donation true?
In general, the TV and movie industry sensationalize and distort information about donation and transplantation. Remember these mediums are designed to entertain audiences and are not the best way to learn the facts about any particular subject.
Is there a black market for organ donation? Can I get paid for my organs?
There is no evidence of such activity ever occurring in the United States. According to the National Organ Transplant Act of 1984, it is illegal to buy or sell human organs in the U.S. Violators are subject to fines and imprisonment. In addition, a national governing body reviews every organ donation and transplant. Strict regulations prevent any type of "black market" existence in the United States, and the World Health Organization, among others, has strongly condemned such practices abroad.
What is living donation?
Living donation is when a living person donates an organ or part of an organ to another person. The living donor may be a relative, friend, spouse or in-law. Or, the donor may be a stranger that has volunteered to help someone else. Living donation usually involves one of these organs: a segment of the liver, the lobe of one lung, a kidney, or a portion of the pancreas. Living donation is an alternative for individuals awaiting organ transplantation from a deceased donor.
Is it possible for me to be a living donor?
In Virginia, all transplant centers who perform living donor transplants also evaluate the potential living donors for patients on that center's waiting list. If medical suitability and willingness is determined, then the donation and transplant takes place at that center. You should call the center where the patient you know is listed in order to determine whether living donation is an option. You can get more information on living donation standards for both transplant centers and for living donors from the United Network for Organ Sharing.