barbara
02-28-2010, 11:20 PM
Stem cell treatment takes mom from death's door to remission
Southtown Star
February 28, 2010
By Donna Vickroy
Jennifer Osman embraces what most of us rebuff. "Routine. I definitely appreciate the normalcy of my life," she said.
On April 1, Jennifer will celebrate a new chance at life. That day marks the close of a five-year clinical trial to treat the chronic disease that brought her to death's door.
Jennifer Osman underwent a stem cell transplant in 2005 for chronic inflammatory demyelinating polyneuropathy, which leads to a loss of movement or sensation.
In 2005, the 38-year-old Plainfield mother of two became the first in the nation, and second in the world, to undergo an experimental stem cell transplant for Chronic Inflammatory Demyelinating Polyneuropathy, an inflammation of the nerves that leads to a loss of movement or sensation.
Jennifer was diagnosed with CIPD in 2002, and her condition became increasingly debilitating over the years despite enduring several immunosuppressant treatments a week.
It got to the point where she had trouble breathing, was overwhelmed with weakness and couldn't raise her arms or move her legs.
Her husband Rick, 39, would help her get dressed. And many days, he'd have to carry her upstairs to bed.
For most CIDP patients, a few plasma treatments, coupled with medications, are enough to keep the disease manageable. But Jennifer was not responding to treatment.
She remembers the day doctors told her it wasn't working.
"We were devastated. We came home, sat on the couch, turned on the TV and just sat there."
Then the TV newscast they were watching featured a story about an experimental treatment program for Multiple Sclerosis at Northwestern Memorial Hospital.
MS attacks the body's central nervous system; CIDP attacks its peripheral nervous system. Both are autoimmune diseases. Both have no cure.
The next day, she called Northwestern and learned hospital officials had been searching for qualified CIDP patients to enroll in a similar program.
"This was my first hope for life."
The fight of her life
Her request for the experimental treatment was initially turned down by her insurance company, but several letters from doctors and family members, as well as a financial breakdown of how the experimental program, though pricey, would still be less costly than a lifetime of the approved plasma treatments that weren't working, convinced her HMO to sign off on it.
"I was approved on my birthday," she said.
Though the hospital had been successful in treating MS patients this way, hers was the first such treatment for CIDP. No one knew what to expect.
Rick, a firefighter/paramedic at the time, understood the severity of the situation.
"My biggest worry was that she wasn't going to make it," he said. "It was our last hope but it was very scary."
Jennifer and Rick attended different high schools but met at a summer driver's education program at Thornton Fractional South in Lansing.
"I've known Jen all my life. I couldn't imagine life without her."
A toll on everyone
During Jennifer's five-week s tay at Northwestern, Rick moved into an apartment a few blocks away. Jennifer's parents moved into their Plainfield home to care for their two daughters, Meghan, now 15, and Bethany, now 11.
"I would go to the hospital at 8 in the morning and stay until 11 at night," Rick said.
Prayer helped him get through those uncertain days. Their church, Christ Community Church of Plainfield, organized a group to help the family out. They bought a freezer and had it placed in the Osman's garage. Parishioners took turns preparing meals and placing them in the freezer. One couple even offered to cover all of their expenses if insurance refused to pay.
The treatment was not easy for Jennifer, who suffered repeated bouts of nausea and vomiting.
But it worked.
She was discharged in April.
But after a few days, she developed a high fever.
"I thought 'I went through all this for nothing,' " she said.
Doctors said she could have relapses while her cells metabolized.
While she was recovering at home, she was kept on immunosuppressant medication so her immune system could regrow slowly. During that transitional year, every attempt was taken to keep germs at bay. Shoes had to be taken off outside and the girls had to change clothes after coming home from school.
Her last relapse was in May '05.
She was weaned off the meds after a year and has been off all treatments for two years now.
Oh, happy day
April 1 will mark the five-year anniversary of the transplant.
"Doctors don't like to say you're in recovery, so they say remission," she said. "But I feel great. Perfectly fine."
She has returned to nursing, part time, and Rick has finished up a master's program in adolescent and family therapy. He has also set up a Web site connecting sufferers of CIDP (caringbridge.org/il/jeno).
"I want to offer new hope to autoimmune patients whose treatment isn't working," he said.
To date, nine CIDP patients in the United States have had stem cell transplants. The world's first transplant recipient, a patient in the Netherlands, is also in remission.
Jennifer and Rick are not sure how they'll mark the big day. They chuckle at the idea of "just going out to dinner."
That used to be a major ordeal.
"Now we can look back and laugh," Rick said.
HOW IT WORKS
In February 2005, the process of collecting stem cells began for Jennifer Osman's experimental treatment. Once doctors had gathered and frozen between 1 million and 2 million stem cells, they would knock out Jennifer's immune system and restart everything with the harvested and treated cells.
The harvesting complete, Jennifer was then blasted with high doses of chemotherapy for five days until her immune system was virtually wiped out.
Once Jennifer's blood count had been zapped, the treated stem cells were injected back into her body. It would take weeks for them to work their way into her bone marrow, creating more healthy cells and, in theory, overtaking the Chronic Inflammatory Demyelinating Polyneuropathy that was attacking her peripheral nervous system.
Southtown Star
February 28, 2010
By Donna Vickroy
Jennifer Osman embraces what most of us rebuff. "Routine. I definitely appreciate the normalcy of my life," she said.
On April 1, Jennifer will celebrate a new chance at life. That day marks the close of a five-year clinical trial to treat the chronic disease that brought her to death's door.
Jennifer Osman underwent a stem cell transplant in 2005 for chronic inflammatory demyelinating polyneuropathy, which leads to a loss of movement or sensation.
In 2005, the 38-year-old Plainfield mother of two became the first in the nation, and second in the world, to undergo an experimental stem cell transplant for Chronic Inflammatory Demyelinating Polyneuropathy, an inflammation of the nerves that leads to a loss of movement or sensation.
Jennifer was diagnosed with CIPD in 2002, and her condition became increasingly debilitating over the years despite enduring several immunosuppressant treatments a week.
It got to the point where she had trouble breathing, was overwhelmed with weakness and couldn't raise her arms or move her legs.
Her husband Rick, 39, would help her get dressed. And many days, he'd have to carry her upstairs to bed.
For most CIDP patients, a few plasma treatments, coupled with medications, are enough to keep the disease manageable. But Jennifer was not responding to treatment.
She remembers the day doctors told her it wasn't working.
"We were devastated. We came home, sat on the couch, turned on the TV and just sat there."
Then the TV newscast they were watching featured a story about an experimental treatment program for Multiple Sclerosis at Northwestern Memorial Hospital.
MS attacks the body's central nervous system; CIDP attacks its peripheral nervous system. Both are autoimmune diseases. Both have no cure.
The next day, she called Northwestern and learned hospital officials had been searching for qualified CIDP patients to enroll in a similar program.
"This was my first hope for life."
The fight of her life
Her request for the experimental treatment was initially turned down by her insurance company, but several letters from doctors and family members, as well as a financial breakdown of how the experimental program, though pricey, would still be less costly than a lifetime of the approved plasma treatments that weren't working, convinced her HMO to sign off on it.
"I was approved on my birthday," she said.
Though the hospital had been successful in treating MS patients this way, hers was the first such treatment for CIDP. No one knew what to expect.
Rick, a firefighter/paramedic at the time, understood the severity of the situation.
"My biggest worry was that she wasn't going to make it," he said. "It was our last hope but it was very scary."
Jennifer and Rick attended different high schools but met at a summer driver's education program at Thornton Fractional South in Lansing.
"I've known Jen all my life. I couldn't imagine life without her."
A toll on everyone
During Jennifer's five-week s tay at Northwestern, Rick moved into an apartment a few blocks away. Jennifer's parents moved into their Plainfield home to care for their two daughters, Meghan, now 15, and Bethany, now 11.
"I would go to the hospital at 8 in the morning and stay until 11 at night," Rick said.
Prayer helped him get through those uncertain days. Their church, Christ Community Church of Plainfield, organized a group to help the family out. They bought a freezer and had it placed in the Osman's garage. Parishioners took turns preparing meals and placing them in the freezer. One couple even offered to cover all of their expenses if insurance refused to pay.
The treatment was not easy for Jennifer, who suffered repeated bouts of nausea and vomiting.
But it worked.
She was discharged in April.
But after a few days, she developed a high fever.
"I thought 'I went through all this for nothing,' " she said.
Doctors said she could have relapses while her cells metabolized.
While she was recovering at home, she was kept on immunosuppressant medication so her immune system could regrow slowly. During that transitional year, every attempt was taken to keep germs at bay. Shoes had to be taken off outside and the girls had to change clothes after coming home from school.
Her last relapse was in May '05.
She was weaned off the meds after a year and has been off all treatments for two years now.
Oh, happy day
April 1 will mark the five-year anniversary of the transplant.
"Doctors don't like to say you're in recovery, so they say remission," she said. "But I feel great. Perfectly fine."
She has returned to nursing, part time, and Rick has finished up a master's program in adolescent and family therapy. He has also set up a Web site connecting sufferers of CIDP (caringbridge.org/il/jeno).
"I want to offer new hope to autoimmune patients whose treatment isn't working," he said.
To date, nine CIDP patients in the United States have had stem cell transplants. The world's first transplant recipient, a patient in the Netherlands, is also in remission.
Jennifer and Rick are not sure how they'll mark the big day. They chuckle at the idea of "just going out to dinner."
That used to be a major ordeal.
"Now we can look back and laugh," Rick said.
HOW IT WORKS
In February 2005, the process of collecting stem cells began for Jennifer Osman's experimental treatment. Once doctors had gathered and frozen between 1 million and 2 million stem cells, they would knock out Jennifer's immune system and restart everything with the harvested and treated cells.
The harvesting complete, Jennifer was then blasted with high doses of chemotherapy for five days until her immune system was virtually wiped out.
Once Jennifer's blood count had been zapped, the treated stem cells were injected back into her body. It would take weeks for them to work their way into her bone marrow, creating more healthy cells and, in theory, overtaking the Chronic Inflammatory Demyelinating Polyneuropathy that was attacking her peripheral nervous system.