A Body That Gave Her Almost No Warning:
Lori Battelle’s Journey Through Anti-GBM Disease
In March 2008, Lori was 39 years old and stationed in Okinawa, Japan, where she worked as a Department of Defense federal civilian employee. She was healthy, active, driven and accustomed to a busy, high-powered life. Then, while on vacation in Bali, Indonesia, with her husband, something changed.
Lori’s parents had paid for the couple to enjoy a special buffet dinner and show. She had been looking forward to it so much that she ate only a light lunch, determined to save room for the evening. But when she arrived at the buffet, something felt wrong. “Everything looked delicious,” Lori recalled, “but my stomach turned and I thought, ‘No, I am not hungry for that.’”
She went to the bathroom and noticed that her urine was dark—about the color of iced tea. Her first thought was hepatitis. “Oh no, I got hepatitis from eating something,” she remembered thinking. “I’ll see the doctor as soon as I get home to Japan.”
Despite the wonderful vacation, Lori felt strangely disconnected. “I felt flat and unusually quiet. I’m usually a driven, mentally busy person, but it was like something heavy settled around me.”
Searching for an Answer
Within a few days, Lori was back in Okinawa. Still unsure what was happening,
she wondered if she might simply have a urinary tract infection. “Maybe I will drink some cranberry juice,” she thought.
She went to see her doctor, who ordered extensive laboratory testing. When Lori provided a urine sample, the color was startling. It was cranberry red. Lori asked whether the color could have been caused by drinking an entire container of cranberry juice. The answer was no. “That’s blood,” she was told.
The medical team at Camp Lester Hospital worked diligently to determine what was happening. Lori remembers the care she received from the military medical team as excellent. But there were limitations to what could be done locally: Okinawa did not have a nephrologist or the equipment needed for a kidney biopsy. She was given options for transfer, including hospitals in Tokyo and Honolulu. Lori ultimately chose to return to the United States, where she would continue her care in Norfolk, Virginia.
Her kidney function had fallen dramatically. During the journey home, she was evaluated at Kapiolani Hospital in Honolulu. By then, her vision had become somewhat fuzzy, she had begun vomiting, and she felt increasingly ill. She was told that her kidney function had improved somewhat and was cleared to continue to Norfolk the following day.
Looking back, Lori believes Honolulu might have been the better option, but at the time she made the best decision she could with the information she had. Once she arrived in Norfolk, Lori went directly to the nephrologist who had been scheduled to see her. He immediately admitted her to Norfolk General Hospital. For the next week, doctors searched for an explanation. Because Lori had recently traveled in Bali, she was tested for an extraordinary range of possible infections, including malaria, schistosomiasis, leptospirosis and other diseases associated with travel.
At one point, her doctor asked what she had done in Bali. “I swam in the Indian Ocean, pet the birds and the lizards.” Her doctor’s response was essentially: Good. You did everything I need to know about. Then they tested her for everything. The testing was exhausting. Lori remembers being isolated and undergoing repeated procedures and scans. Even drinking the barium for one test was difficult because her stomach seemed to reject almost anything she put into it.
“I felt guilty like I was consuming too many resources,” she said. Eventually, she was discharged on blood-pressure and diabetic medications. But the mystery remained.
The Diagnosis
A kidney biopsy was performed, and the sample was sent for testing for anti-GBM antibodies. Then came a phone call Lori would never forget. She was at a car dealership, with the papers in front of her to purchase a Mustang Shelby, when her nephrologist called. “You are very, very sick. You need to come to the hospital right away.” Lori tried to respond practically. “Sure. Let me get my new car washed and I will drive myself in.” Her doctor was emphatic. “Don’t sign the papers on the car. You need to come now.”
That was when the seriousness of the situation finally clicked. “I won’t live to enjoy this car, will I?” Lori asked. “You are very sick. I can’t have you walking around,” the doctor said. Lori immediately went to the hospital. It was her third admission.
The biopsy and urine findings had finally provided the answer: Lori had anti-glomerular basement membrane disease, or anti-GBM disease. The condition was formerly known as Goodpasture’s syndrome. Anti-GBM disease is a rare autoimmune disease that can cause inflammation and damage to the small blood vessels of the kidneys and lungs. When kidney involvement is severe, the disease can progress rapidly and become life-threatening.
When Treatment Became Its Own Battle
Lori’s nephrologist, Dr. Thomas Whelan, waited for the results to be unequivocal before beginning treatment because the treatment itself would be intense. The next day, Lori began intravenous Solu-Medrol, plasmapheresis three times a week and cyclophosphamide. She would spend approximately 30 days in the hospital.
The diagnosis had taken roughly two months, from March to May. Treatment continued until January 2009, when her doctor finally told her that they could say she had survived and was medically clear.
But surviving the disease did not mean that life simply returned to normal. The combination of plasmapheresis, cyclophosphamide and 80 mg of prednisone was physically brutal. The high-dose prednisone also brought diabetes into the picture, adding another layer of medication and management to an already overwhelming treatment regimen. As Lori puts it with characteristic humor, she got a “free subscription” to anti-GBM disease, complete with “bonus non-returnable diabetes.” Lori was taking numerous medications and receiving injections. Her bone marrow struggled to produce enough red blood cells. She experienced severe shaking, weakness, vomiting, fluid retention and overwhelming fatigue.
At one point, she remembers lying on the bathroom floor, sweating and shaking, her heart pounding in her ears. Her husband asked whether she wanted to go to the emergency room. “No,” she said. “I want to die in my bed with my cats.” She was surprised to keep waking up.
Another time, she told her doctor, “I can’t swallow anymore pills. I need a break. Let me have a day to be normal.” She described the experience as an impossible athletic event she couldn’t win. Her legs felt incredibly heavy. Fluid was building up around her heart. She felt as though she were “encased in lead.”
The Parts of Illness No One Sees
There was another dimension to the illness that Lori believes deserves to be acknowledged: What happens when a person becomes profoundly dependent on others?
Lori could no longer function as she had before. She was exhausted, moody and physically dependent on others. She was dealing with hair loss, bleeding, vomiting, medications, injections and the constant work of caring for her catheter port and measuring her urine. Her marriage came under extraordinary strain. Her husband had suddenly become a full-time caregiver, and neither of them was prepared for what that meant. Their relationship eventually ended.
Her workplace was another source of pain. Lori had been accustomed to a high-powered, dynamic life. She was active, driven and used to being busy and independent. Suddenly, she could not work normally. She was medically non-deployable, and her health made even ordinary tasks difficult. While Lori was still hospitalized at Norfolk General, members of her management team came to the hospital for a staff meeting. She was wearing a hospital gown and connected to medical equipment. They asked when she was coming back to work. Lori remembers thinking: Do you not see me attached to the blood transfusion machine? I can’t even get to the toilet. She ultimately lost her job and says she has never fully recovered financially.
For Lori, these experiences became part of the trauma of the disease. “The medical side is survivable,” she said. “People are not.”
Those Who Stayed
And yet Lori also wants her story to make clear that there were people who showed up for her. Dr. Kenneth Bonaparte, her physician in Okinawa, did everything he could for her. The medical teams, both military and civilian, treated her with extraordinary care.
Dr. Whelan became a particularly important figure in her survival. He was direct with Lori about the seriousness of her condition and the importance of taking every medication exactly as prescribed. Lori understood what was at stake. “I didn’t want anyone to see that,” she said, referring to the possibility of dying from severe bleeding. “So I took everything.” Her body responded to the treatment. Dialysis never became necessary.
Lori also credits her health insurance plan, the Foreign Service Benefit Plan, with supporting her care without hesitation. She remembers the people involved as genuinely interested in understanding anti-GBM disease and helping her receive the care she needed. For Lori, that support demonstrated how important it can be for patients with rare diseases to have people willing to keep fighting for them.
Her Faith Became Another Source of Strength
“It was hell on earth,” she said. “God did walk with me.” Lori says her faith in God was strong during her illness, and it remains strong today. Her relationship with God has not always been peaceful or uncomplicated. She admits that she still complains. “I have a very strong faith in God and lean on Him because He is all there is.” And sometimes, she said, she tells God that He needs to do more of the heavy work because she is tapped out.
Faith, for Lori, has not meant pretending that the experience was good. It has meant finding a way to continue through something that was very bad.
Survival Has Not Erased the Fear
Lori still worries about her kidneys. Her kidney function stabilized after treatment, but her estimated glomerular filtration rate, or eGFR, has ranged from approximately 53 to 59 over the past two years, and the decline has frightened her. eGFR is a measure used to estimate how well the kidneys are filtering blood. After everything she experienced, a laboratory number is not simply a laboratory number. It can bring an entire chapter of her life rushing back.
Still, Lori continues. She earned a master’s degree. She has traveled the world. She has built a life beyond the one she expected to have when she entered that buffet in Bali in 2008. Her career changed. Her relationships changed. Her body changed. But her life did not end.
Finding a Different Kind of Hope
Lori does not believe every story has a traditionally happy ending. She would never wish anti-GBM disease on anyone, especially a child. Instead, she believes, “We have to change our idea of what happy is.” For someone facing a frightening diagnosis, that may be a more honest form of hope than a promise that everything will go back to normal.
Hope may mean surviving… finding physicians who listen and fight for you… discovering that your body can respond to treatment even when you are certain you cannot endure another day. It may mean
accepting help, rebuilding a career or finding a new sense of purpose after illness has taken away the future you expected. And sometimes, hope may simply mean waking up the next morning.
Lori’s story became a journey about uncertainty, fear and loss. But it is also a about excellent medical care, determined doctors, supportive systems, faith and a patient who kept going when she wasn’t sure she could.
Her experience does not erase the seriousness of anti-GBM disease. It shows what survival can look like after it. Sometimes surviving a catastrophic illness does not mean getting your old life back. Sometimes it means discovering that there is still a life to build.