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A rollercoaster of emotions

Local family copes with uncertainty of woman’s rare disease

March 31, 2013
By DAVID ALEXANDER - Staff Writer (dalexander@timesrepublican.com) , Times-Republican

It started with the headaches. Doctors told her it was only migraines. Then things got worse. They got so much worse.

AJ Giannetto, 31, of Le Grand, said his wife of five years, Jamie, 35, began getting the headaches in September 2011. He took her to the hospital in Grinnell. He took her to the hospital in Ames. He took her to Marshalltown. They all said the same thing; they put her on migraine medication, but couldn't explain the headaches.

"They didn't really have a reason," he said. "She did a little better for a while."

Article Photos

CONTRIBUTED PHOTO
AJ Giannetto and his wife Jamie are shown here in the this contributed photo. Doctors diagnosed Jamie with a rare autoimmune disease in 2012.

But in his heart of hearts, he knew something was wrong.

It wasn't until April 2012 that he had confirmation. Jamie had accompanied him to one of their daughter's soccer games. AJ was coaching. When they went to leave, she told him her ear hurt. She was slurring her speech. They went to the doctor the next day. He couldn't see anything, and told them Jamie was fine. They went to a second doctor.

Nothing.

Throughout April, AJ and Jamie were in and out of the doctor at least four times. Additionally, Jamie's migraines sent her to the ER repeatedly. Toward the end of the month, AJ began to notice Jamie was getting confused often, so he took her to a neurologist in Ames. She spent a couple weeks there while doctors performed a spinal tap, ran MRIs and drew blood. Finally, they diagnosed her with acute disseminated encephalomyelitis (ADEM). They put her on intravenous steroids. With the medication and physical therapy, Jaime's health began to improve.

AJ brought her home in the middle of May. The next day, she began vomiting profusely.

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Doctors at the Mayo Clinic in Rochester, Minn. eventually diagnosed Jamie with Susac Syndrome, a rare autoimmune disease that causes loss of speech, motor control and hearing. Jamie's friend Matt Gannaway has been to the clinic and convinced AJ to take Jamie. Doctors there began running all the same tests. It wasn't until they began testing her eyes, that they realized what they were dealing with.

The couple was at Mayo another couple weeks before they began having trouble with the insurance company. The lesions in Jamie's brain were causing mini strokes that greatly diminished her speech and mobility, but her insurance company didn't want to cover the physical therapy she needed to assist her with her declining motor skills. So, AJ prepared Jamie for the 3 hour trip back to Iowa. At the last minute, Mayo staff told them they could stay.

"That wasn't going to happen," AJ said. "There was no way on earth she was going to stay when I told her we were ready to go I couldn't fight her there because it was a losing battle."

Because of her increased loss of motor control, Jamie now needs to use a walker to get around the nursing home where she lives. The disease has caused permanent hearing loss, which necessitates the use of hearing aids. Her bed in her immaculately clean room - those know her say she is fastidious about domestic cleanliness - sits low to the ground. It is hooked to a multitude of alarms in case she falls.

Perhaps the hardest part for her family, is that the disease is intermittent, meaning its symptoms are worse some days than they are other days.

"We have rollercoastered," AJ said. "We will do better. We will do worse."

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In December, Jamie spent another 10 days at the Mayo Clinic. Doctors there did a round of plasmapheresis to clean her blood and began chemo therapy.

AJ works third shift as a machinist at Fisher Controls. Having children, ages 13, 10, 7 and 5, makes managing his days difficult. Some days he doesn't even sleep. But he always makes time to go see Jamie. He will bring her dinner, sometimes Chinese food, sometimes fast food, and sit on the floor next to her bed, watching "Pawn Stars" or "Storage Wars" on TV until she falls asleep.

Jamie's mother, Barb Weuve, 62, of Webster City, often helps getting the children off to school and keeping the day-to-day operations running.

"His job is to take care of Jamie," she said. "My job is to take care of him and his family."

Jamie's sister, Adrian, AJ, Weuve, friends Lanette McWilliams and Gannaway, AJ's mother and sister and many others all lean on one another, she said. It's how they cope.

Weuve was a licensed practical nurse for 40 years before retiring. She said she went to see her daughter while she was hospitalized in Ames. Jamie was so confused she kept trying to jump from her bed and run into the hall.

"That's when I knew something was desperately wrong," she said.

Weuve said Jamie now has nine lesions on her brain that continually cause her cognitive problems. Everything doctors are doing, and will continue to do, is simply trying to suppress her immune system. She has good days, and she has bad days. One day she might be able to interact normally, another she might not recognize her.

"It just breaks your heart. It breaks your heart. It breaks your heart," she said. "You will just stare at her, and it will be that blank look."

But she always manages to recognize AJ and the kids, Weuve said.

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With one more round of chemo therapy to go, Jamie's fate is uncertain.

McWilliams and Gannaway have begun fundraising efforts to cover the swelling costs of caring for Jamie. AJ said he can never predict what will happen. One minute things might be fine, the next, he is packing up Jamie's van to drive to Rochester. An ambulance ride to Rochester costs $5,000. Then there is the cost of gas. AJ said he is looking to sell his Dodge Ram and trade it in for something that gets better gas mileage.

Although his doctor put him on an anti-depressant to help with the stress, with the weight of his wife's illness, four children to support and working full-time, friends suggested he speak with a counselor to provide an additional outlet.

"When would I have time to do that?" he said. "It's not going to make it better. It's not going to make it go away. I don't see any point in getting too high or too low."

Jamie's family is playing a waiting game now, hoping the treatment works and that she will improve. Because of the rarity of Susac's Syndrome, nailing down a prognosis is difficult. Some people recover fully. Others have lingering health issues. The disease overwhelms some, making their symptoms progressively worse.

But those statistics are based on a statically irrelevant number of people. The cause is still unknown.

"I am sure there are worse things out there to have," AJ said. "But it doesn't feel like it."

 
 

 

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