For years, Whitney Blakely suffered from a disease for which her local doctors didn’t have a name.
The Rockford, Illinois woman first noticed symptoms of inflammation and hand weakness when she was 18; three years later, she tested positive for systemic lupus. She then began what became six months of steroid treatment, and at the end of that time, tests showed she no longer had the disease.
Except she wasn’t really cured. She continued to experience symptoms on and off, but doctors didn’t feel comfortable treating her for something the tests did not support. “It became a game of cat and mouse,” says Whitney, now 34. “The symptoms persisted, my insurance changed, I saw a different doctor, the doctor couldn’t find anything wrong with me, and I repeated the whole cycle again.”
When Whitney was in her late 20s, she married her husband, Cornel, and at age 30, she began undergoing fertility treatments. She was having trouble carrying babies to term—she had lost a total of four pregnancies in the first trimester. When the fertility clinic performed genetic testing prior to treatment, it discovered she had lupus anticoagulant, an immunoglobin that can cause an increase in inappropriate
blood clotting. She still underwent a cycle of in vitro fertilization (IVF), but during the stimulation portion of the treatment, she started experiencing lung issues. She saw a pulmonologist in Rockford who eventually sent her to UW Health in Madison.
The UW Health pulmonologist immediately referred Whitney to a rheumatologist, and after just one appointment, the rheumatologist confirmed that she still had systemic lupus. Whitney began seeing Tripti Singh, MD, nephrologist at UW Health, who ordered a kidney biopsy and discovered that Whitney was in Stage 4 lupus nephritis. That meant she was nearly in kidney failure. “At that point, I was actually feeling relieved that I finally had a diagnosis,” says Whitney. “It explained why I was always tired.”
Dr. Singh began treating Whitney with several different medications, including mycophenolate, an immunosuppressant, and prednisone, a corticosteroid used to treat immune system disorders. Slowly, Whitney’s kidneys stabilized, and her symptoms became more manageable.
Her fertility, however, was a different story. Her fertility doctor suspected she had difficulty staying pregnant either because the lupus identified the baby as a foreign body and attacked it, or because she had been forming blood clots near the implantation site. Whatever the reason, Dr. Singh did not believe it was a good idea for Whitney to become pregnant again because of the medications she was taking. “I appreciate it when doctors are straightforward with me,” says Whitney. So, she and her husband went a different route: They found a gestational surrogate, who became pregnant after one round of IVF, and on Sept. 26, 2018, Caelum Blakely was born.
When the UW Health Lupus Clinic opened late in 2018, Whitney began seeing her doctors there. “I am able to manage my symptoms now,” she says, “but due to 10 years of not being treated, I have joint and nerve damage. I appreciate that it’s a one-stop shop, since I’m traveling from Rockford.”
As she strives to stay healthy in order to care for her infant son, Whitney says she is grateful for the care she found at UW Health. “I truly feel the medical staff at UW Health got me where I am today,” she says.
Update: Whitney's family expanded when she delivered a healthy baby boy in November 2020. "The Lupus Nephritis team participated in the care of my pregnancy and it was their lab work and help that kept me safe," says Whitney. "My boy and I may not be here without them and I'm forever grateful!"