Matt Lewis sat beside his wife, Janell, as she fought for her life in a hospital near their Nevada home.
He was fighting a different battle against his health insurance company, National Congress of Employers (NCE), and claims administrator, Allied National, for access to the surgery they needed to make her healthy again.
Matt and Janell met 13 years ago on the set of ‘Legends of Concert’ in Las Vegas. Matt was an Elvis impersonator. Janell was a dancer. It was love at first sight.Matt Lewis
In an interview with Independent Journal Review, Matt said he knew right away that his current business partner was the person he wanted to marry:
“I know this is cliché, but she is my soulmate. We were cut from same fabric.”
Their marriage quickly turned into a fruitful business partnership, performing shows in countries around the world.
But in 2015, Janell started noticing that her hands would occasionally shake. The couple thought perhaps she was drinking too much coffee. Then she started getting heart palpitations.
A few months later she experienced pounding headaches and was sweating profusely, leaving behind puddles of sweat on chairs that would often embarrass her in business meetings.
Matt told IJR that his otherwise healthy — and athletic — wife had no idea what was happening to her:
“Janell would come out of meetings and look like she had just been in the swimming pool. She would ask me, ‘Am I having a nervous breakdown?'”
The symptoms worsened in September 2016 when the headaches progressed to vomiting. She went to multiple doctors, but nobody could find the cause of her mysterious symptoms.
Their family doctor finally tested her for Pheochromocytoma (Pheo), a benign tumor that forms in the adrenal gland and causes blood pressure spikes due to large amounts of epinephrine.
In mid-February, she was diagnosed with Pheo and scheduled a follow up with their doctor. But before they could return to the hospital, on February 26, Janell started vomiting violently.
Matt knew something was wrong. He called 911 and Janell was rushed to the emergency room (ER), where it was determined she was having a stroke.Matt Lewis
The stroke was caused by high blood pressure. It damaged some of her vital organs, including her heart, lungs, kidneys, and brain. Her vision was also distorted, but it could’ve been much worse.
Matt said doctors were amazed that she was able to recover as quickly as she did:
“She’s come away from the stroke without losing anything. Her vision is returning and we’re feeling really blessed.”
Fortunately, Matt had brought along information on her recent diagnosis to the hospital.
In the ER, doctors had to change all of her treatments as soon as they learned she had Pheo to prevent her blood pressure from spiking.Matt Lewis
After 20 days in the ICU, doctors couldn’t stabilize Janell. Her symptoms were getting progressively worse, and her blood pressure was spiking erratically.
Matt sent around her medical information to nearby specialists. All of the doctors said Janell needed immediate surgery to remove the tumor.
She needed an expert endocrinologist familiar with Pheo to perform the procedure, but this doctor doesn’t have hospital privileges in the state of Nevada. They were also recommended to find an experienced anesthesiologist to minimize danger in the risky operation.
The University of California Los Angeles (UCLA) said they could take her as a patient. But NCE refused to pre-authorize surgery for a pre-existing condition — even though she had only been diagnosed with it days earlier.
As a paying customer for healthcare, Matt was upset:
“When the doctor says we need to escalate this case to a higher level of care, it should be a no brainer. But the insurance company did not see it that way.”
He had lawyers contact the insurance company and asked doctors to contact the company, but they refused to budge.
Matt tried everything to get Janell to California. He begged the hospitals to allow him to pay cash. But without health insurance, hospitals were nervous about taking her.
Finally, UCLA agreed to take them for $125,000 up front for the surgery, treatment, and recovery.
Matt started a GoFundMe page to raise cash for her emergency healthcare.Screenshot/GoFundMe
The next morning they woke up to more than $17,000 in donations. In a week, they had raised more than $175,000.
The couple was thankful for the kindness of strangers. They realized how odd their situation had become and got a little stir crazy in ICU. As entertainers with a sense of humor, Matt wrote a song about their stranded state.
Unfortunately, UCLA quadrupled the original estimate. Matt couldn’t raise half a million dollars. Shortly thereafter, the University California, San Diego (UCSD) heard about the couple and offered to help for $200,000 total.
They needed $200,000 in cash to give to the hospital and an extra $10,500 to transport her there.
By March 22, they were able to raise enough money and took out personal loans for the rest. UCSD agreed to pick them up in a helicopter on March 24 and scheduled her for surgery.
After two and a half hours, Janell’s surgery was deemed successful. She’s now recovering in the safety of a hospital that better understands her condition.
Matt doesn’t know how much of her hospital stay will be covered by insurance:
“The hospital is going to bill the insurance company. It remains to be seen if they will pay at all. The only way I could get here was to pay cash and hope the insurance would pay after. Basically, the insurance wasn’t counting on us coming up with the cash. I really don’t know what happens from here.”
Right now, he’s thankful that his wife was able to get the specialized surgery that she needed:
“UCSD heard our story and wanted to help. I’m very grateful to them. This facility is incredibly professional. The doctors are good communicators. We’re in the right place. I’m just so happy to be here.”
Matt thinks it’s ridiculous that his family had to raise money to provide his wife with access to surgery that doctors recommended.
While he personally doesn’t want to publicize his story, he knows that his wife’s experience is an example of the problems in the health care system.GoFundMe
As Congress continues to work on a new health care plan, he wanted to be sure this loophole in coverage would be addressed:
“Democrats and Republicans have to quit jacking around and making health care political. The people caught in the middle don’t care about the politics. We care about getting health care right. Politicians have lost sight of the problems people are facing and the people they are supposed to serve.”
He believes hundreds of people donated to their GoFundMe page because they were tired of seeing the health care system trample individual people:
“People are tired of the system working against their friends. The whole medical system, insurance included, has been really hard on people.”
Matt said that he personally was better off before the Affordable Care Act was put in place. He purchased Allied National in 2016 when United Healthcare tripled in price. At the time, he thought it was an affordable substitute for their previous insurance.
Now he believes the insurance company uses this loophole to avoid coverage without denying procedures:
“They said they don’t pre-authorize anything. It wasn’t just us. But what hospital is going to take you knowing they might not get paid?”
IJR reached out to NCE, Allied National, and Spring Valley Hospital for more information, but they refused to comment at this time.
If it wasn’t for Matt’s ambition and love for his wife, Janell could’ve died. But it was never an option for him to give up on getting her the health care she deserved.