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Sharing Mayo Clinic: Tackling a rare autoimmune disease
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When Kelli Anderson first decided to get her odd symptoms evaluated, she thought she had something resembling the flu. She never dreamed doctors at Mayo Clinic would diagnose her with an uncommon disorder that was attacking her kidneys.
Shortly before she turned 24, Kelli Anderson began experiencing strange physical symptoms she couldn't explain. "I just wasn't feeling well," she says. "It felt like I had the flu, but I never felt like I was actually going to vomit. I didn't have an appetite, and there were times when it felt like I wanted to keel over at work."
But Kelli powered through, continuing to go to work each day. "I did whatever I had to do," she says. When her symptoms intensified, though, Kelli knew it was time to get help. "As soon as I had a couple days off, I decided it was time to go to the doctor because I'd also developed pain on the right side of my body where my kidneys are," she says.
Kelli's appointment at Mayo Clinic's Rochester campus began with testing to determine whether the persistent pain was being caused by something like a urinary tract infection or kidney infection. "They didn't find either, so they did some blood work and a CT scan to see if I had a kidney stone," Kelli says.
Early the next morning, Kelli received a phone call. "I was told I needed to go to the Emergency Department at Saint Marys Hospital right away, and that I was likely going to be admitted."
Kelli got to the hospital as quickly as she could. After she arrived, Andrew Rule, M.D., a Mayo Clinic nephrologist talked with Kelli about why she was there. "He diagnosed me with anti-GBM, which is a super-rare disease that's also known as Goodpasture's syndrome," Kelli says. "It's an autoimmune disease where the antibodies in my immune system were attacking my kidneys, and my kidneys were shutting down."
Kelli sat in shock. "I was like, 'What the heck do I do now?'" Dr. Rule and the rest of her care team at Mayo Clinic not only would answer that question for her, but stay by her side every step of the way.
A series of ups and downs
In Goodpasture's syndrome — also known as Goodpasture's disease, anti-glomerular basement membrane disease and anti-GBM disease — antibodies that usually fight infection attack healthy parts of the body instead. The disease often affects the lungs and kidneys, and it can lead to kidney failure. In Kelli's case, it also had an impact on her blood. After she was diagnosed, Kelli had the first of many plasma transfusions under the care of Allan Klompas, M.B., B.Ch., BAO, a Mayo Clinic resident physician in Transfusion Medicine.
"My plasma was being affected by the disease," Kelli says. "I was told I was going to have plasma transfusions for the next 20 days. After those 20 days, Dr. Klompas and the rest of my care team would know whether they were working."
"At the age of 24, there I was on dialysis." — Kelli Anderson
A week later, Kelli's treatment plan hit a snag when her body's rising creatinine level forced her nephrologist, Vesna Garovic, M.D., Ph.D., to put Kelli on dialysis. "She really didn't want to, but there was no other choice," Kelli says. "At the age of 24, there I was on dialysis."
Kelli also spent a night in a Mayo Clinic ICU when her oxygen reached dangerously low levels two weeks into her dialysis treatments. Finally, a glimmer broke through Kelli's cloud of medical misfortune.
"I was continuously on oral chemo drugs and my hemoglobin was so low that I needed 14 blood transfusions over the course of my stay in the hospital," she says. "But even though I was still on dialysis, after 25 days in the hospital, I was discharged and sent home because I was stable enough to be released."
A very merry Christmas
After being home for just two weeks, Kelli experienced a setback when she developed an infection in her dialysis line. "I ended up back in the hospital again," she says. "I was also running a fever of 104, so my care team said, 'You need to go in.'"
Kelli was in the hospital for seven more days. After that she was given a new dialysis catheter and sent back home. But 10 days later, there was more trouble. "I passed out on my kitchen floor because I had accumulated too much fluid in my body, and it was affecting my brain," Kelli says.
Back to Mayo Clinic Kelli went, where her care team decided to increase the amount of fluid they'd been taking out of her body during her dialysis treatments. That seemed to do the trick.
"I left the hospital after that last stay and went to my dialysis treatments maybe two more times, and my doctors then said I didn't need to come in to dialysis anymore," Kelli says. "But they wanted me to continue checking in with the outpatient dialysis unit for the next couple of weeks just to make sure everything was going OK."
"Dr. Kumar had initially thought that my kidneys wouldn't recover from all of this and that I'd need a transplant. But two days before Christmas, he told me all of that had changed, which was really, really cool." — Kelli Anderson
Soon Kelli's outpatient nephrologist, Rajiv Kumar, M.D., reassured her that everything was going more than OK.
"He told me I didn't need to be on dialysis anymore and that I didn't need a kidney transplant," she says. "Dr. Kumar had initially thought that my kidneys wouldn't recover from all of this and that I'd need a transplant. But two days before Christmas, he told me all of that had changed, which was really, really cool. I couldn't believe it."
A new opportunity
Five days into the new year, Kelli's good fortune continued when her care team officially removed her dialysis catheter. "I continue to see my in-clinic nephrologist, Dr. Stephen Erickson, every couple of months just to make sure nothing is going to relapse, but I feel great right now," Kelli says.
She gives much of the credit for her renewed health to the members of her care team at Mayo Clinic.
"My first stay in the hospital was on the first floor of the Francis Building at Saint Marys, and honestly, every nurse on that floor was phenomenal," she says. "They all took such great care of me, as did every doctor I saw or encountered. I saw multiple nephrologists, and spent a lot of time with Dr. Garovic and Kumar."
Kelli also has high praise for her dialysis team.
"Every single person I encountered at Mayo Clinic could not have been better. I couldn't have asked for or hoped for a better care team." — Kelli Anderson
"Everyone in dialysis was also awesome, especially Dr. Kumar and [nurse practitioner] Beth Timmerman who would call to check in on me regularly to make sure I was doing OK," she says. "Every single person I encountered at Mayo Clinic could not have been better. I couldn't have asked for or hoped for a better care team."
Kelli was so impressed with Mayo Clinic, she decided to join it as a staff member. She now works as an administrative assistant in Mayo's Research Centers work unit. "I started on April 9," she says. "On my 25th birthday."
Though she's still in her early days working at Mayo Clinic, Kelli says it has mirrored her experience as a patient.
"It's been a great opportunity so far," she says. "I saw how well Mayo Clinic took care of me, and I just want to make sure I maintain that same mentality of always doing the best I can do in my own work now because that's what Mayo Clinic has done for me as a patient every step of the way."
HELPFUL LINKS
- Learn more about Goodpasture's syndrome.
- Read about dialysis and kidney transplant.
- Explore Mayo Clinic's Rochester campus.
- Request an appointment.
