Icing on the Cake
Shara Goff’s Road to Recovery
It all started with a cold. No big deal. Having a cold was nothing new for Shara Goff. After being diagnosed with Juvenile Rheumatoid Arthritis at the age of eight, the 39-year-old was used to a weakened immune system. But, suddenly, this cold started to feel different than the rest.
“I was losing weight and noticed that my urine was changing colors,” says Goff. “I knew that I needed to see my primary care doctor at The Nebraska Medical Center.”
After scheduling an appointment, lab results showed Goff had low white blood cell counts, low platelets and elevated liver levels. Doctors immediately ordered more tests.
“I’ll never forget it. I was admitted to the med center on December 14, 2011 and placed in isolation because of the risk of infection,” remembers Goff. “I spent the holidays in the hospital.”
On New Year’s Eve, Goff was transferred into the care of Mojtaba Akhtari, MD, an oncologist/hematologist at the medical center. He ordered a bone marrow biopsy, which confirmed, Goff had aplastic anemia, a rare blood disorder that affects 600-900 people in the United States each year. Only about 20 percent of those diagnosed survive past 18-20 months due to the risk of infection.
“When we treat aplastic anemia, we use a specific drug called anti-thymocyte globulin (ATG) which tries to suppress the immune system and help the bone marrow recover,” explains Dr. Akhtari. “But, some patients can develop infections, and that’s exactly what happened with Shara.”
In March 2012, Goff developed a staph infection and pneumonia. Doctors had to remove parts of her lungs and she was intubated. After making it through the surgery, Goff spent the next four months at the hospital.
“When I was finally discharged, they sent me to a rehab facility,” says Goff. “Being bed ridden, and having arthritis, I had to learn how to walk all over again.”
Within her first week at rehab, Goff’s recovery took an unexpected turn. She developed clostridium difficile, an infection of the bowels, and doctors had to perform a fecal transplant to save her life. Goff became only the second person to have the surgery done at the med center.
“My sister was the donor, and they took the good bacteria from her body and put it into mine. Miraculously it started to turn things around,” says Goff.
But, the good news was short lived. Weeks after the fecal transplant, Goff got sick again. Doctors discovered she had a small bowel obstruction and another lung infection. Further testing showed she had C. difficile again, and her weight drastically dropped to 95 pounds.
“I was a skeleton of my former self,” remembers Goff. “It was hard to look in the mirror. I so thin, with no hair and had to wear glasses instead of contacts to protect my eyes from infection. Because of the meds, I also lost several layers of skin.”
Goff’s condition continued to get so severe, some recommended she consider hospice. But, Dr. Akhtari wasn’t ready to give up.
“I felt that we were able to fight the good fight against her disease,” he recalls.
Dr. Akhtari reached out to a physician with the National Institutes of Health and tried getting Goff on an experimental drug called Promacta.
“Shara’s insurance rejected the drug three times, but I insisted and they finally agreed,” says Dr. Akhtari. “Promacta helped stabilize her condition.”
By the spring of 2013, Goff was doing much better, and Dr. Akhtari decided to try another round of ATG combined with Cyclosporine, an oral med that treats aplastic anemia.
“When I first got sick two years ago, I received the horse ATG med with the cyclosporine,” explains Goff. “This time, Dr. Akhtari decided to try the rabbit ATG med with the cyclosporine.”
Within a month, Goff was starting to feel like her old self. For the first time in 16 months, her white blood cells were increasing – which meant, she didn’t have to wear a hospital mask everywhere she went.
“What a beautiful day that was,” remembers Goff. “It made me so grateful and hopeful to continue on the road to recovery.”
By Thanksgiving, Goff was infection-free and going longer between blood and platelet transfusions. Dr. Akhtari decided to schedule another bone marrow biopsy for early 2014, and the results surprisingly shocked everyone.
“It showed my bone marrow functioning at an average of 30 percent,” smiles Goff. “The last bone marrow biopsy I had a year ago showed my bone marrow functioning between 5-10 percent. I’m so blessed to receive the quality of care I have at The Nebraska Medical Center. It truly is an amazing place.”
As Goff continues to improve, Dr. Akhtari has mentioned the possibility of doing a bone marrow transplant for long-term results. But right now, he wants her to focus on living in the moment.
“I think Shara is able to have a normal life,” assures Dr. Akhtari. “She can start working full-time, start driving, enjoy being with friends and pursuing happiness. That’s the life everyone is entitled to.”
“I know it sounds cheesy, but every day is such a gift and such a blessing,” says Goff. “I don’t take it for granted. Everything from here on out is icing on the cake.”