MANSFIELD — When Millicent Gamble, 48, was diagnosed with sarcoidosis in 2010, doctors said she had just a few years left to live.
Gamble refused to let this prognosis keep her from pursuing additional treatment for her inflammatory disease that affected her upper and lower lymph nodes, lungs and heart.
“I was a fighter and I believed that I needed a doctor that would not speak death over me,” the Mansfield resident said.
Gamble proceeded to search for treatment elsewhere, ultimately connecting with doctors who, based on a series of tests they ran, advised Gamble to undergo surgery to have a cardiac pacemaker and an implantable cardioverter defibrillator (ICD) implanted in her chest.
Having already undergone surgery for a pacemaker implantation that same year, Gamble was scared.
“They were like, ‘You need this right now,’ so I ended up having another heart surgery in November of the same year,” she said.
Thereafter she was prescribed Methotrexate, a chemotherapy agent and immune system suppressant, to manage her chronic disease. She’s been taking the medication since 2011.
At a recent doctor’s appointment, her Methotrexate dosage was cut in half. She’s slated to return to the doctor in November.
“If I have no sarcoidosis flare-ups, they’re taking me off of Methotrexate, which is huge for me,” she said.
“If I can maintain being off of Methotrexate, I will be in remission, which no one ever suspected.”
Gamble started experiencing sarcoidosis symptoms around 2000. Her immune system grew weaker, causing her to become susceptible to sickness.
“I would catch anything,” she said. “I worked in an office setting at a call center and if someone had a cold I would get pneumonia. If someone had strep I would have to go the hospital because my throat would close. I was life-flighted two times.”
She searched for answers, meeting with specialist after specialist and carrying with her a binder full of information on her illness and diagnoses that had been ruled out.
“It’s very frustrating, and you feel very hopeless,” she said.
After undergoing a biopsy in 2010, it was determined that she had sarcoidosis in her lymph nodes and lungs.
“Once I was diagnosed it was a relief just to know,” she said.
According to the American Lung Association, “Many people diagnosed with sarcoidosis never have symptoms, but it can cause shortness of breath and loss of lung function and sometimes permanently damage your lungs. In very few cases, sarcoidosis can be life-threatening if it causes heart or severe lung disease.”
Gamble found herself among the few when doctors discovered the disease was also in her heart and gave her a grave prognosis.
“They said I wouldn’t live to see 2015,” she said.
“But I said, ‘Y’all are not God. You can’t tell me that.’”
“It’s called maintenance after you get diagnosed,” Gamble said. “They treat the symptoms because there’s no real cure for the disease.”
Gamble has experienced a number of health issues caused by sarcoidosis, including eyesight issues, Bell's palsy, and heart issues.
Outside of medications and surgical procedures, Gamble has found a number of ways to cope with her disease, the main one being her faith.
“My faith is probably stronger now than it has ever been in my life,” she said.
She’s also made changes to her diet.
“When they had me on steroids, I was huge,” she said. “I work with a nutritionist and eat better now. I’m still a big girl, but I’m nowhere near where I used to be. I’m like over 225 pounds smaller than where I used to be.”
Meditation and music — particularly jazz — have also helped.
“Jazz puts me in a whole different place,” she said. “When I’m really in pain, if I just let the music play, it soothes me.”
After everything she’s been through, Gamble believes every day is a gift.
“It’s like you get a whole new breath of fresh air of life because you don’t take it for granted anymore,” she said.
Gamble wants to give back by advocating for sarcoidosis awareness and encouraging others with rare and/or unknown diseases to be their own health advocate.
“Do your own research,” she advises. “Talk to your doctors. It’s not just the doctor’s job to know; you have to know your disease.
“I think I know more about sarcoidosis now than I ever probably would have known, and that’s one of the reasons why I advocate for it now.”