OLIVER SPRINGS, Tenn. (WATE) — Jason Robbins was diagnosed with a genetic kidney disease in 2005, and nearly 15 years later, he is in need of a kidney transplant.
For several years, he was able to live a fairly normal life with Autosomal Dominant Polycystic Kidney Disease, or ADPKD.
In 2010, Robbins started to feel the side effects of his disease: high blood pressure, back pain, loss of kidney function and cysts covering his kidneys.
“Most kidneys are the size of your fist. Mine are about the size of footballs,” Robbins said.
He said most kidneys weigh less than a pound, while his had an estimated weight of 7 pounds.
As his disease progressed through the year, Ribbons started to have other common side effects: kidney stones and cystic ruptures.
“I’ve had 76 kidney stones in the last eight years,” Robbins said.
In February 2018, Robbins health took a turn for the worse.
Robbins went to the restroom at work and all of the sudden felt lightheaded. He fainted, hit his head on the sink and was rendered unconscious for a few minutes.
When he came to, he went to the hospital and stayed for about two weeks.
His doctor, Kendra Henson with the Knoxville Kidney Center, then told him he needed dialysis. His kidneys were functioning at 7%.
The dialysis treatments are tough make it difficult for him to keep a normal schedule. Robbins is a supervisor at Tate & Lyle in Loudon and is the main provider for the family.
His wife, Eva Robbins, is a special education teacher and, while her benefits are better than his and helps with the medical bills, she makes a lot less money.
“I don’t have a regular schedule. I can’t go to a dialysis clinic three times a week,” Jason Robbins said.
Eva Robbins, their eldest daughter Hannah and a couple of others trained for five weeks on home dialysis.
Jason Robbins needs dialysis four times a week, and each treatment takes at least four hours.
The family heavily depends on a schedule that Eva Robbins puts together.
“We have to rely on this machine to keep my husband alive, and that’s what we’re going to do,” Eva Robbins said.
Jason Robbins’ kidney function continued to decline. His kidneys, as of Sept. 26, were functioning at 4%.
“You realize just how fragile life is. Cause you can go just two days without doing something and your body literally starts to fall apart,” Jason Robbins said.
He said the constant pain and dialysis also affect the time with his three children and wife.
“A lot of times I feel like I’ve failed my family, my children, because I get sick a lot,” Jason said. “I’ll be at a function of theirs that I really want to be there for them, and I have a kidney stone or a cyst rupture or, with this disease, you just get sick.”
“We either don’t get to go (to family functions) or we have to arrive late and miss out on the family time and stuff because we have to do dialysis. I mean, that’s what’s keeping him alive,” Eva said.
Jason Robbins said he felt like his children had to grow up faster because of the disease.
Not only did Hannah Robbins have to learn how to administer home dialysis for her father, but the youngest sibling, Jonah, had to call 911 for his father.
“Jason passed out on (Jonah). Luckily, Jonah knew to call 911 … it’s just a constant worry. And we don’t really talk about the worry either. It’s just something that, you know, is always there,” Eva Robbins said.
His children also miss him at their volleyball games, golf tournaments and football games.
“Whenever we do have like events and stuff and he can’t be there, it does kind of make you upset but then you gotta think positive. And then when he is there it makes it a lot better,” Emma Robbins said.
“People don’t understand that maybe one day he might not be able to be at my wedding, or there for a while I didn’t even know if he was going to make it to my high school graduation,” Hannah Robbins said.
To enjoy life with his family, Jason Robbins needs a kidney transplant.
The Robbins family was originally told their father would only have to wait a couple of years on the transplant list.
One issue though, is that Jason Robbins has blood Type O-positive, which means he can only receive a kidney from someone who is either O-positive or O-negative.
Two people have already tried to donate their kidney to him.
He said that one person from his church went through testing for eight months.
The chances were looking good, until they weren’t. The doctors found an underlying condition making the person unable to donate to Jason Robbins.
The family recently received the bad news about the other person.
“We had a kidney donor, someone who had, just out of the goodness of their heart, decided to get tested and was a match for me. But they had a significant possibility of developing kidney stones. So they turned them down as a donor candidate,” Jason Robbins said.
He said there was a list of health issues his donors cannot have.
“We’re very thankful for these people that have attempted to be my hero. And that’s really what I’m looking for, is a hero to help me and my family out,” Jason Robbins said.
The Robbins family is also setting up several fundraisers to help pay for medical expenses.
The Robbins will have a booth at 10 a.m. Oct. 5 at the Pleasant Grove Baptist Church in Coalfield.
The family will have a booth Oct. 12 at the Coalfield Alumni Homecoming at the Coalfield School football field.