Tenia Shaw is still smiling.
Although serious health concerns are weighing heavily on her, she’s got a job to do and a family to care for. So she’s trying to remain positive and she keeps smiling.
But it’s tough.
Tenia is living with Polycystic Kidney Disease, an inherited disorder in which clusters of cysts develop on the kidneys, causing them to enlarge and lose function over time.
“I’m scared. My dad and my grandfather had it and they passed it down to me,” she said. “As my cysts have grown, they’ve affected the kidneys so much that I’m down to about ten percent of kidney function.”
That means she’s often tired, has lost a lot of weight and the toxins are building up in her blood. She was in the hospital recently and one of her fears was realized when she was told that must begin dialysis. The procedure keeps the body in balance by removing waste, salt and extra water to prevent them from building up in the body and keeping a safe level of certain chemicals in the blood — things healthy kidneys would do on their own.
Tenia has to undergo dialysis treatment four hours a day, three days a week.
“I had hoped it wouldn’t come to this,” said the mother of two. “I really had hoped that I’d have a kidney transplant by now and wouldn’t need dialysis. But here we are.”
The treatments and taxing on Tenia’s body and they’re expensive. So her husband set up a GoFundMe page in hopes that the community might be able to help with two things — funds to offset medical expenses including a potential kidney transplant, as well as give people access to information on how they can find out if they’re a viable candidate to donate a kidney.
“I don’t want to leave my kids,” Tenia said of her 13-year-old and 9-year-old. “That’s my biggest fear in all this. I don’t want to leave my family.”
About three years ago, Tenia began the process of finding out if she’s a candidate for a kidney transplant. A transplant (if successful) would allow her to get off dialysis and live a more normal, healthy life.
But getting a kidney donated to her by a viable donor is a long, arduous and expensive process. Her mom and sister have applied to see if they can donate. But she needs as many people as possible to find out if they can even be considered a candidate.
“I’m approved for a transplant,” she said. “We just have to find a kidney now.”
The GoFundMe page can be accessed at www.gofundme.com and searching “Tenia’s Kidney Transplant.”
“The page is asking for donations toward her medical expenses and toward the transplant,” said Tenia’s husband Rocky. “And the GoFundMe also has a link to a page for Emory’s screening of potential donors. It would mean the world to us if people either donated to found out if they could be considered as a donor.”
Although she’s tired and weak, Tenia still goes to work, helping others in the community. For the past six years she has worked at the Sexual Assault Center of Northwest Georgia where she’s the Victim Services Coordinator.
For the past six years Tenia has dedicated her time, energy and invested her emotions into a job she’s passionate about — helping victims of sexual assault.
“I coordinate all the services victims might need,” she said. “If they need a referral to another agency or if they need counseling, I oversee that. “We go to court with them and help them through every step of the process. And we follow up with law enforcement and help the victim understand everything that’s going on.”
Kim Davis, the executive director of the sexual assault center said Tenia is selfless and always doing for others without complaint.
“As her boss, I’ve known she’s been sick for a while,” Davis said. “But Tenia isn’t the type to ask for help. She’s always giving but doesn’t like to receive.
Davis said Tenia started at the SAC as a victim advocate and was promoted to victim service coordinator last year.
“Tenia works hard to ensure victims receive ongoing care after the trauma of rape,” Davis said. “She works tirelessly to keep things going — from applying for victims comp., helping them get out of a tough situation, getting them in counseling and so on. She also manages our statistics, tracks subpoenas and just keeps us all in check. She’s a huge asset to us at the center. But most of all she is a great friend.”
Tenia is passionate about what she does for victims of sexual assault but with dialysis is making it tough to do what she loves. Her hours at work will have to be reduced as she must dedicate more of her time to dialysis treatments.
“I want to stay positive,” she said. “But my grandfather who had this disease died from kidney failure. So I’m scared. I’m scared for my girls. I just want to be healthy for them.”
When Rocky set up the GoFundMe page for his wife’s medical expenses and transplant, he set the goal at $50,000 knowing that the dialysis treatments, transplant itself and anti-rejection medication would probably far exceed that figure.
“The cost of this even with insurance and even government help is very high,” he wrote. “(Tenia) is a fighter but fighting a disease like this doesn’t come free. She has given her life and career helping those in need. She’s given me two beautiful daughters and we can’t imagine life without her.”
If you're considering being a kidney donor, visit www.emory.donorscreen.org/register/donate-kidney.