Grim Outlook Inspires Local Mom To Warn Others About Lupus, Complications
In recent weeks, as complications from a long-undiagnosed case of systemic lupus continue to take their toll on Nicole Tardiff-Brooks, she still musters the strength and courage to take pen in hand and write letters to her 4-year-old son, Colin.
Short of a medical miracle, Colin will be reading those letters celebrating milestones like birthdays, graduations, and perhaps his wedding, with only photographs and memories of Nicole to accompany them.
And while a terminal medical diagnosis is a terrible and heartbreaking prospect for her and Colin, the situation is even more inconceivably tragic as a result of an unrelated yet critical medical situation involving her husband, Evan Brooks.
In September 2014, about two years after Nicole’s initial diagnosis and with medical bills already mounting, Evan suffered a traumatic brain injury. Besides putting him in an Intensive Care Unit for two weeks, ensuing complications caused an extended period of unemployment, forcing the young Newtown family to lose their home, and pushing the couple to relocate to their parents’ residences in town.
Prior to the roiling storm clouds that invaded their life, Nicole was a successful loss prevention specialist at a local retail store, and Evan worked full-time in lower Fairfield County as an arborist. But today, the couple is surviving with whatever work Evan can manage, along with the support and goodwill of family members, friends, and others who began making contributions to a recently established GoFundMe.com page.
“This has really taken us to our knees,” Evan said, sitting beside a teary-eyed Nicole softly stroking her shoulder. “We’ve been together ten years, but we never could have guessed even five years ago where we would be today. I try to stay optimistic and take each day as it comes — but I can’t imagine losing my best friend... my soul mate.”
Words Of Warning
Speaking to The Newtown Bee, Nicole still expresses a range of frustration, regret, and anger over ignoring the intermittent warning signs of lupus that often masked themselves as occasional aches, pains, and bouts of exhaustion. After all, none of these symptoms taken individually are unusual for an active young woman and new mom.
But at the same time, she is true to her nature — shaking off the weight of innumerable unknowns that render even the coming days opaque to shift the conversation toward helping others.
“I just hope I can help prevent someone else from having to go through this,” she said.
“Nicole is extremely selfless... always thinking about everybody else,” Evan added.
“I know now this didn’t have to happen,” Nicole continued. “In most cases, people diagnosed early with my condition can see it sent into remission. These days, I know a lot of people are like me — they just don’t go to the doctor. But even a routine physical or screening can make all the difference by getting them on medication sooner.”
While there are days when Nicole’s medical team at Columbian Presbyterian Hospital are amazed at how active she can be, there are as many days when it is not so easy.
“They told me some time ago to get my affairs in order — sometimes I feel like I have just days left. Other days I still believe in miracles,” Nicole said.
“There are still days when we can be in denial... good days,” Evan continued. “Other days there is a ton of pain — periods where Nicole can’t get out of bed. Those are the days when I have to struggle with the fact that we’re running out of time.”
“In the meantime, Colin knows his mommy is sick, and she’s getting support,” Nicole said.
The Back Story
According to details on the GoFundMe site, shortly after Colin arrived in 2011, Nicole started to experience symptoms — extreme fatigue, debilitating muscle and joint pain, and hair loss — that she wrote off as “normal ailments.”
These symptoms became worse as several months went by. Finally other symptoms developed that could not be ignored, prompting her to finally visit her primary care physician.
After several specialist consultations, endless blood workups and diagnostic testing, Nicole was diagnosed with systemic lupus erythematosuslupus (along with advanced stage 4 chronic kidney disease (CKD), Sjogren’s disease, severe neurological and liver damage (all piggybacking conditions of lupus) in October 2012.
Evan said his wife has experienced an “unbelievable amount of organ damage, and the advance stages of the secondary medical conditions led Nicole’s medical team to come to the conclusion that lupus had been active [but undiagnosed] for years.”
To try to prevent the lupus from wreaking any more havoc on her organs, the health care team started started Nicole on a wide regimen of medications and also a strong round of IV Cytoxan, which is used in chemotherapy to get it into remission so she could be eligible to be placed on the kidney transplant list.
Unfortunately, strong immunosuppressants, corticosteroids, and other medications Nicole’s health care team put her on to reverse the lupus took an even greater toll on her organs, especially her heart, causing a condition called cardiomyopathy or heart failure, according to the site.
With the failed attempts to get the lupus into remission, Nicole can not be a candidate for a transplant. Last winter, Nicole’s health started to really decline. Stage 4 CKD ended up end stage renal disease and she began dialysis.
But due to the cardiomyopathy, dialysis is too dangerous for Nicole to undergo the suggested amount of weekly treatments.
Currently she must be put under anesthetic to undergo her roughly once-a-week regiment, but the family is weighing whether to continue that, along with examining options that hospice support could bring.
And Evan is under growing pressure from his medical team to enter a regional rehabilitation center to get required treatment for dysautonomia, the condition he has developed since his injury.
Dysautonomia International describes the condition as an umbrella term used to describe several different medical conditions that cause a malfunction of the autonomic nervous system. That system controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.
People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheartedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
“This situation has landed me in the hospital about eight times in the last six months,” Evan said, “so we’re in a really bad position — financially, emotionally, and physically.”
To provide any contributions to help the family, readers are asked to visit gofundme.com/helpbrooksfamily.