Victor and Robin Jones. Photo by Kyle Norby

 

Back in October, the Jones family had their lives changed forever. Last time we met with Victor “Grandpa” Jones, he had gone through surgery to remove his failing heart and replace it with a temporary TAH (total artificial heart) until a donor could be found.

Fast forward to now, and the wait is still ongoing for a new heart. With the TAH doing its job and being home from the long hospital stay, Victor still requires 24/7 care that his wife Robin is currently providing.

“Well, I’m out now and mostly mobile. I have a walker. Basically my life consists of going from appointment to appointment now,” Victor Jones said. “Between prescriptions, gas money, things like that and living off just a limited budget, it’s been a little bit of a struggle.”

With such a unique condition, Victor must travel to a dialysis center in Tempe multiple times a week. The facility is the only one certified to accommodate this type of machine in Arizona. Robin has since become certified to operate the machine and perform maintenance to take care of her husband along with some help from their grandsons Darian and Jaylin. The local Maricopa fire department is also trained on the TAH unit if anything happens. Because of this condition, chest compressions are not an option, as they are rendered useless without a heart and with key arteries missing.

“As you can see, I have my stack of bags in the corner because tomorrow we are back on the road again.” – Robin Jones. The pack includes extra batteries, back-up unit, paperwork and medication.

Robin has been unable to go back to work as a health professional at Saddleback Elementary due to taking care of Victor. Being told they make too much from Victor’s social security check of $2,400, the Jones are unable to get in-home care from Medicaid agencies like AHCCCS.

“We have tried different agencies to come in and help, but they are afraid of this (machine),” Robin said.“We did have a nurse come in here. She came in, then she actually quit. After she found out about this device, she said, ‘I can’t handle that.’”

Many agencies do not provide this type of care due to the high-risk nature of Victor’s condition. Robin said if he becomes unplugged, he will die.

Aside from in-home care issues, prices for victor’s medication have also taken a toll on them financially. One of the prescriptions Victor must take three times a day costs $230 after insurance for a 30 day supply. Robin said they use the app ‘GoodRx’ to search for discounts, helping them get the price down to $190 for the prescription.

“First and foremost, again, I would like to thank everybody. It has been a little rough but I don’t want to sit here in a begging type situation,” Victor said. “Getting past all that, I really want to thank everybody for the support.”

“This is my suitcase that I take every day wherever I go. I have a battery pack.” – Victor Jones. Photo by Kyle Norby

Victor’s artificial heart comes in the form of a suitcase-type casing strapped inside a backpack that runs plastic tubes up into his body, doing the work of a heart.  There are four batteries for the machine that provide about three hours of battery life if the unit is not plugged into an outlet. It takes approximately four to six hours to charge batteries. He is able to carry it on his walker and attend social events now, if he is feeling up to it.

“My free time, I’m going to say, is me resting. With appointments, it’s a lot of running around, you get very tired. I try to get as much rest as possible,” Victor said.

While the struggles are overwhelming and money is tight, the Joneses plan to keep moving forward as they have been.

“You have to start over. But I’m better where am I now compared to rehab, where I had to learn to walk again. Basically, like a baby,” Victor said.

The Banner medical team that has been with Victor since the beginning of his journey has been very receptive and accommodating to the couple’s needs, Robin said. If something is abnormal, they can send photos to the team and get immediate responses.

Still searching for a heart, “Grandpa” Jones’s story is far from over.


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