Jerilyn Williams was sitting inside her car when she got the phone call. It was November of 2021, and she was leaving another doctor’s appointment, barreling home to relax after a long day of poking and prodding. The jarring chimes of her phone cut through her radio, and she picked it up with one hand while steering her car with the other. “This is she,” she replied into the phone. A beat of silence. Some mumbled responses. “Oh…okay, thank you.” She jabbed the end call button, tossing her phone into the passenger seat. Her white knuckles gripped the steering wheel all the way home.
Jerilyn Williams had just been told that she had a ticking time bomb inside her chest, and there was not much she could do about it.
This unfortunate news came after a string of medical mishaps in her life — in 2020, she contracted a terrible case of COVID-19 and was diagnosed with skin cancer only a few months later. Then, in November of that same year, Mrs. Williams discovered a lump in her chest. Stage three breast cancer. No big deal, she told herself. Just another hurdle to jump, another bridge to cross in life.
And so it began: hundreds of doctors’ appointments, evaluations, medications, chemotherapy treatments, weight loss, painkillers, and wig shopping. A double-mastectomy in July 2021 signified the end for her — she wished good riddance to her breasts, knowing that there was a light at the end of the tunnel once they were gone. Her husband watched her get wheeled into the operating room, gently kissing her forehead and promising to see her on the other side. After all, a double mastectomy is a standard procedure.
Except, within that standard procedure on Jerilyn Williams, she would flatline and become pronounced dead. Heart failure.
Heart failure? There were no signs of any kind of heart issues until that moment. Luckily, she was resurrected and wheeled back into her hospital room where her surgeon was waiting with the news. During surgery, she could not receive enough oxygen and began to get fluid overload in her lungs. Her heart, which was fully functioning at a healthy 71% ejection fraction before chemo, was down to 21% – which means that she was suffering from heart failure.
This news confused doctors like Mrs. Williams’ cardiologist, Dr. Barry Trachtenburg. It was assumed that the chemo treatments from cancer were what weakened her heart, but it was very abnormal for it to occur that drastically. Dr. Trachtenburg reached out to Mrs. Williams to participate in a genetic mutation test from a company called Invitae, which was doing free testing on all cardiomyopathy patients.
On November 12, 2021, her results came back: she had a positive mutation of the TTN gene, specifically on the second chromosome. It is a rare genetic condition that weakens and enlarges the heart, resulting in sudden cardiac arrest in adulthood. According to the Cleveland Clinic, the TTN mutation affects only 1 percent of the population; however, in Jerilyn William’s case, it affects nearly her entire family. On her mother’s side, her grandpa died in his 60s from sudden heart failure — and all six of his siblings suffered the same fate, ranging from ages 20-60. No one knew the real reason behind their untimely deaths – that is, until Jerilyn’s results came back. Given the set of circumstances, doctors did not have to look far to piece together why her heart gave out in surgery. For a cardiac arrest to happen, the TTN gene mutation has to be activated – which can happen by agents such as pregnancy, alcohol abuse, and chemotherapy.
Enter the oncologist responsible for administering Mrs. Williams’ chemo: Dr. Matei Socoanateau of Texas Oncology in Longview, Texas. A common practice for chemotherapy patients is monitoring their hearts before, during, and after being administered doxorubicin (often referred to as ‘the red devil’ of chemo due to its painful and destructive tributes). This way, the doctors are aware of any negative effects of the medicine and can take proper preventative measures.
Dr. Socoanateau did not monitor Jerilyn Williams’ heart at any time, despite the ‘red devil’ being well known to damage hearts. Had he performed the proper practice, the genetic mutation would have been caught, they would have found other treatments for Jerilyn, and she would be much healthier today. Her heart would not be failing, she would not have a defibrillator inside of her, and she would have longer than the anticipated two years left to live. “All of this,” she said, “Because of one doctor’s decision. It has altered my life forever – and everyone’s around me.”
Her husband, Eric Williams, is equally (if not more) angered by the medical system. “There is no excuse for something like this to have gone unnoticed. She is someone’s daughter, someone’s wife, someone’s mother. Not just another statistic, and they [the doctors] can’t seem to see that.”
In September of 2021, Jerilyn sat down on the examination chair of Dr. Socoanateau and asked him directly why he did not monitor her heart. “He looked at me,” Jerilyn recalled, “and he said, ‘There’s such a small percentage that has any kind of problem from this chemo.’ And I said, ‘But that percentage is right in front of you. You still don’t think it’s important?’ He looked right at me and said no, and that he doesn’t ever plan on monitoring it because it isn’t required.”
“I’m angry, every time I think about it I get angry. Things need to change.” Jerilyn has consulted with lawyers, all of whom have agreed that she is a victim of medical neglect and malpractice. There is an average of 85,000 cases of American medical malpractice a year, and around 7,000 of those alone are from Texas. Her next goal is to find a lawyer who will take the lawsuit against Dr. Socoanateau and Texas Oncology, but so far she hasn’t had any luck. According to Texas Medical Association, in 2003, Texas passed a law that a medical facility or doctor can’t be sued for less than $250,000 – and in Jerilyn’s case, no lawyers want to take the suit because it doesn’t promise a financial gain. “I don’t care about the money,” she said. “Once you win a case, you set a precedent to start changing the law. That’s what I want, it’s what I’ve been working on for two years and I still can’t find anyone to take the case. It’s frustrating. It’s not about me. I’m damaged goods. It’s about what I can do for other people.”
The next steps for Mrs. Williams, now 50, are somewhat muddled. Indeed, her life will never be the same – in the past year alone, she has gone to hundreds of doctors’ appointments, has dozens of prescription pills she takes a day, and can’t do simple daily tasks that she used to be able to do with ease. As a junior high teacher, she can’t move around the classroom like she used to – a crime in her eyes, as she was once known for being energetic and lively. One of her passions in life is traveling, but in addition to it being a tedious activity on its own, even going through the airport is a struggle thanks to her heart defibrillator – which always sets off the security alarms at TSA.
Despite everything, Mrs. Williams still clings to the silver linings that came from this. She says that she sees cancer as a blessing because of the people she has met along the way, and for teaching her that she can’t control everything in life. As far as her heart failure, she admits that it is the worst thing to ever happen to her – but she hopes to change the system so that others won’t have to go through what she went through.
“I think the medical system failed me completely,” Mrs. Williams said bitterly, her mouth twisting into a frown. “I think it fails everybody… It’s not just the medical system, it’s the pharmaceutical system, it’s the lobbyists, it’s the American medical world. They don’t care. They’re out for money. It’s not all doctors, and it’s not all hospitals. It’s just the big picture and the bottom line.”
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