Colin knows Mommy is sick, but is too young to comprehend the lifelong impact her disease will have on him.
Unfortunately, unless she experiences a medical miracle, Colin won’t have his mom around to celebrate his coming milestones like the first days of school, homecoming dances, or his wedding day.
Nicole suffers from a long undiagnosed case of systemic lupus, and in recent months, the devastating complications of the disease have taken their toll on her.
The tragically heartbreaking and inconceivable situation is made so much worse by the fact Nicole’s husband Evan, was victim of a traumatic injury in 2014. Evan developed dysautonomia, which has prevented him from working, and unfortunately the family lost their home.
Thankfully, they are supported by friends, family, and generous community members, who have gone so far as to create a GoFundMe account. But none of it is enough to keep up with the insurmountable medical bills.
“This has really taken us to our knees,” said Evan, sitting next to teary-eyed Nicole.
The couple has been together 10 years and never would have imagined their life as it is today. They want to stay hopeful, but Evan cannot imagine losing Nicole, his best friend and soul mate. Even more unthinkable is that Colin will grow up without his mother.
Nicole does have a lot of emotions about how she and her doctors ignored the warning signs. The emotions range from frustration to regret to anger. The signs of her disease were intermittent and often disguised themselves as occasional aches and pains. She started to experience symptoms not long after Colin was born in 2011, but she wrote off the debilitating joint and muscle pain, total fatigue, and hair loss as nothing more than “normal ailments.” Nicole didn’t visit her doctor because she didn’t think anything was seriously wrong.
She now says even a yearly physical can mean the difference between good health and a chronic condition.
If lupus is detected, patients can get on medication sooner. For Nicole, her symptoms became increasingly worse over the next several months; then new symptoms developed and could no longer be ignored.
Eventually, she was diagnosed with systemic lupus erythematosuslupus. Doctors concluded that her lupus had been active for years, and Nicole was also diagnosed with very severe secondary medical conditions, including advanced stage 4 chronic kidney disease, Sjogren’s, and severe liver and neurological damage.
In an attempt to prevent lupus from causing anymore damage to Nicole’s body and spirit, doctors treated Nicole with a wide range of medications. They hoped the drugs would help Nicole become eligible for a kidney transplant. Instead, the strong immunosuppressants, corticosteroids, and other medications took a huge toll on her organs; in particular, her heart was affected and she developed cardiomyopathy.
Since the lupus is not in remission, Nicole does not qualify for any type of organ transplant. She has already progressed to end-stage renal disease and has begun dialysis, but the cardiomyopathy makes it too risky for her to complete the recommended number of weekly dialysis treatments. Her condition has worsened to the point that she must be put under anesthesia to endure the dialysis treatment. The family has started examining hospice care.
Nicole has good days and not-so-good days. Her medical team at Columbian Presbyterian Hospital is amazed at how active she can be on her good days. But the team told her some time ago to get her affairs in order. She has tried to cope and hopes she can help to prevent others from having to go through the ordeal that she has.
“Sometimes I feel like I have just days left. Other days I still believe in miracles,” Nicole said.
How has lupus changed your life or the life of someone you love? Start a conversation in the comments below!