June 2013 Liver Lowdown
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Lynette and her son celebrate Mother’s Day together.
Lynette describes herself as being “just a mom in a small town in Florida.” Talk about an understatement.
Lynette, who turns 49 on July 27, is one of the bravest, most fascinating, eloquent, and inspiring people you’re likely to encounter.
True, she is a mother of a soon-to-be 25 year old son. And, for many years, like so many other business executives, she played a hyper-active, multitasking role in the increasingly fast-paced business world.
But that was then.
Without warning, Lynette’s routine, hectic world would be turned upside down.
Lynette would discover that she had not one, but two forms of liver disease: Cirrhosis, and Hepatic Encephalopathy (HE), a serious brain disorder that’s one of the major complications of cirrhosis.
Despite the seriousness of HE, for Lynette the diagnosis couldn’t come quickly enough. Prior to that, as HE’s symptoms gradually rose to the surface, she would wonder what was wrong with her. So would those around her.
One of the interesting things you learn about Lynette is that oftentimes, she attracts dragonflies and butterflies.
“I have this amazing ability to draw hundreds of them. They’re in the park, covering my car, even following me. It drops the jaws of people who see it. Sometimes they’re on my shoulder or my arm. Somebody told me the dragonflies and butterflies are a blessing; it’s like being in the presence of a higher being, and that I’m in tune with nature.”
Based on what lay ahead for this mom and businesswoman, Lynette would need to draw on all her powers to confront HE and fight for her life.
You see, Lynette was given 18 months to live. She has just surpassed the 18 month mark.
Maybe the dragonflies are indeed watching over her.
Over a decade ago, Lynette took on the responsibilities of being a human resources assistant near Tampa, managing the payroll for hundreds of employees at four offices. She handled thousands of dollars every month.
Life was normal until 2007, when Lynette noticed how facts and figures that would normally pop instantly into her head were mysteriously slipping her mind.
As her previously sharp memory failed her more often, and to keep up with her daily tasks, Lynette relied on paste-it notes. She methodically placed them from left to right.
And to compensate for her diminished recall processes, she also worked longer hours, including Saturdays.
“In the corporate environment where everything needs to happen immediately, I put on a brave face, so to speak, and a new mask,” Lynette says.
But memory loss was only part of the problem.
In addition to being fascinated by numbers, Lynette has always loved words. An avid reader and talented creative writer (one of her poems was published), she now found herself increasingly at a loss for words.
She would be talking normally to someone and then, without warning, her brain would, as it were, let her down. Lynette would slip into, what she describes as, “a stupor” and she would begin to slur. It was as though her thought process was frozen until each episode passed.
She also had seizures.
Through it all, Lynette hid the symptoms as best she could from family, friends and work colleagues.
It left Lynette asking herself, “What’s going on?”
Why did she have to wage an epic battle just to function normally?
Lynette sits at her desk while the crew of the documentary Wrestling the Monster: Living with Hepatic Encephalopathy prepare to capture on film her fight against HE. Lynette was one of four HE patients profiled in the film, which was sponsored by Salix Pharmaceuticals.
Finally, in 2008, a physician’s assistant suggested Lynette’s symptoms might have been liver-related. A biopsy confirmed that Lynette had Stage 4 liver disease: Cirrhosis. She was told that at some point she would need to get a liver transplant.
After two months of seizures, Lynette also got the explanation she needed for her memory problems and neurological episodes. Her life was being turned upside down by Hepatic Encephalopathy (HE).
Lynette was told that high levels of ammonia, known as Hyperammonemia, were discovered through the diagnostic testing. Hyperammonemia is a disturbance characterized by an excess of ammonia in the blood. It’s a dangerous condition that may lead to encephalopathy and death.
Overt HE is often marked by physical and mental symptoms such as confusion, forgetfulness, slurred speech, personality changes and issues with balance. It occurs when a damaged liver cannot filter toxins as a healthy liver normally would. See the Q&A article about HE is this newsletter.
There is speculation that Lynette’s HE, with high levels of ammonia in the blood, was possibly caused by the presence of toxic benzene gas at her workplace.
Though HE is a long-term, recurring condition with potentially serious complications including coma, for Lynette, at least it helped her to understand why her life had changed so drastically.
Lynette’s HE episodes are still disconcerting, but at least they’re not unexpected.
As she so vividly describes a typical episode, “You’ll be having a nice conversation with friends at a coffee house, talking normally with a wonderful vocabulary. Then the stupor takes over and people with me notice that something’s changed. When it first happened they were anxious but now they have gotten used to it. They’ll wait for the stupor to pass.”
Lynette’s is the last of four stories featured in the documentary Wrestling the Monster: Living with Hepatic Encephalopathy, which was sponsored by Salix Pharmaceuticals.
One of Lynette’s longest HE episodes can be witnessed in the documentary. So too is her struggle with numbers that seem to buzz around in her head.
Wrestling the Monster was directed by Cynthia Wade, an Academy Award-winning documentary filmmaker who portrays the condition's disruptive effect not only on the patients, but also their families.
Lynette says it was an amazing evening as her son joined her at Tampa’s Gasparilla pre-race dinner and bib number pick-up. Lynette went on to complete the 5k race, her first.
Lynette is thrilled that her son has moved back home, and that he’s an important part of her support system. He accompanies her on medical appointments or to the supermarket. Lynette’s sister, shown in the film, keeps in touch on a regular basis.
Since the diagnosis of HE, Lynette is monitored regularly by her doctors. Quite nonchalantly, she reveals that she has outlived the 18 months she was given by her doctor. Her liver, she says, “is stable and compensating quite well, even though the numbers aren’t that great.”
Without the end-stage warning signs like being jaundiced or having a bloated stomach, a liver transplant isn’t on the horizon for Lynette. But she has been pre-listed for a transplant, just in case.
Lynette’s stability can be attributed to a number of things, including her medical regimen—she’s on Xifaxan, a medication manufactured by Salix Pharmaceuticals. Lynette has also consciously made lifestyle changes. She works out at a YMCA, walks and runs, and follows a strict diet, especially avoiding animal fat.
Talking to Lynette, it’s hard to believe she has HE. Seamlessly, she can incorporate her poetic skills into every day descriptions.
That’s when she’s not experiencing HE episodes that can leave her trying to decipher what she wrote or finding out that she couldn’t spell her name.
Most important, Lynette maintains an upbeat outlook, driven by her desire to beat HE. She’s taking on the fight because “there’s nothing else I can do while having to live with a monster that pulls you in.”
Lynette likens herself to a solid oak tree, withstanding a very bad Florida storm or hurricane.
She welcomes each sunrise.
“I think, ‘Ah, the sun’s going to be here, it’s going to be a wonderful day.’ I say, ‘Get out of bed, Lynette.’ I ask myself who I’m going to affect that day in a positive way so that they can be their own branch of an oak tree to themselves, to their families, to their loved ones.”
As you weigh up why Lynette is as stable as she is, given the fact that she has HE, you have to conclude that it’s because of her passion, her drive, her determination to beat off the HE monster with every fiber of her being.
Lynette allows herself to laugh when she says, “I keep telling people I’ll be on the cover of Time magazine because I keep beating the odds.”
No matter how many HE episodes she has to face, Lynette continues to keep a hand-written journal in which she brings her poems to life. She loves to write haiku, and she says she’s completed over 5,000 of them.
And it should come as no surprise that of all the poems Lynette has written, one of her favorites is about dragonflies.
perched near the pond’s edge amongst water lilies and rush heads
an iridescent light casts itself against
the ancient wings of an elongated nymph surrounded by rock’s ledge
naturally and most beautifully sculpted
the ~ Odonata ~