Lawrence resident's condition worsens after stem cell transplant for 'hardening' disease
- on November 3, 2011
Editor's Note: This is a followup story. We first reported about Kim and her battle in November 2010.
Longtime Lawrence resident Kim Banning-Bohmann, 51, is in the fight of her life.
She has a rare and progressive disease called scleroderma that has caused her body to harden from her toes to her jaw. She said it hurts to walk, sit, sleep and eat.
“It’s worsening. I’m much sicker,” Kim said, during an hourlong interview this week at her home.
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Kim’s fight began two years ago when the first symptoms of the disease — a pain and tingling in her hands — began to surface.
After trips to numerous doctors and hospitals, she received the devastating diagnosis in spring 2009. There’s no known cause or cure, but there is hope.
Northwestern Memorial Hospital in Chicago has been performing stem cell transplants on individuals with scleroderma through a clinical trial that began in 2006 and the results have been promising.
Dr. Richard Burt, chief of immunotherapy for autoimmune diseases, said during an interview with the Lawrence Journal-World last year that the transplant has been successful in reversing symptoms in the skin, so normal elasticity and muscle function return. It also can improve internal organ functions.
So far, Kim is the only person who hasn’t seen the promising results.
“I don’t think I’m going to be that one person that it doesn’t work for. I don’t think I am,” she said. “I just think I’ve had these other issues that no one else had.”
On Feb. 28, Kim had a stem cell transplant in Chicago after a month of preparation that including grueling chemotherapy treatments.
Kim said the chemo and transplant were a piece of cake compared to the infection she battled after the transplant. The infection caused her blood pressure to drop and her kidneys to quit working. As a result, she gained 38 pounds of fluid in four days and some of it went to her lungs. She said the fluid went to such weird places that she could barely look at herself in the mirror.
“I looked like a horror picture,” she said. “That is the worst thing that I’ve ever gone through in my life is that infection. It was a feat to even walk to the bathroom.”
While in the hospital, she also vomited “a bowlful of blood” in one day. Doctors discovered she had lesions on her stomach called gastric antral vascular ectasia, or GAVE.
After a month in the Chicago hospital, she returned home in mid-March.
“It was just so good to be home,” she said. “I just needed to be home.”
Since then, she’s been dealing with the stomach lesions. She’s had her blood drawn every week to two weeks. She’s had blood transfusions and procedures where they cauterize her stomach. Because her veins have hardened, they’ve had to put a port in her chest.
Last week, she finally received some good news. Her doctor at Kansas University Hospital saw no signs of bleeding and her hemoglobin has reached its highest level since the transplant.
“I’m kind of hoping I’ve gone through everything I need to … knock on wood,” she said.
Now, she’s praying to see improvement in the scleroderma.
She said a gentleman from Hawaii had a stem cell transplant on the same day that she did. They became fast friends and keep in touch by email. He recently wrote that he’s training for a marathon in June and is raising money to fight the disease.
Meanwhile, for her, the disease has worsened.
It takes about an hour for her to get dressed each day because of the immobility in her hands and the ulcers on her fingers.
“It’s not comfortable to sit for too long because my legs get locked up,” she said.
Kim tries to lead as normal of a life as possible. She still attends her children’s activities, drives, works from home, buys groceries and hangs out with her girlfriends.
“I’m still doing the same things; it just takes longer and it hurts a lot more,” she said.
She was in Chicago about two weeks ago for a follow-up appointment, and the doctor told her that he thinks her new stem cells have been fighting the stomach ulcers instead of the scleroderma. He still believes the transplant is going to work. He hasn’t given up hope and neither has she.
“This whole thing has given me an insight into what’s important in life and what’s not. I think this happened for a reason. I think I needed a wake-up call about what’s really important in life and what’s not,” she said and paused fighting back tears. “Family, your health — everything else is just gravy.”
Here are stories that have been published about Kim: