SYRACUSE -- Imagine never being able to eat and having to be hooked up to intravenous feeding tubes every day in order to live.
Welcome to Chelsea Rushton's life.
The 22-year-old mother of two has gastroparesis, a condition in which the muscles of the wall of the stomach work poorly or not at all. The condition prevents the stomach from emptying food properly and interferes with digestion. It is sometimes referred to as a weak stomach.
Diagnosed after the birth of her second child two years ago, Rushton was told there is no cure. Many of the medications used to treat gastroparesis either have not been helpful or have caused serious allergic reactions. Her insurance company has denied coverage of feeding tube supplies, food and home care.
"This has been so hard," said Rushton's mother, Sherri Petersen. "If she was able to have home care then she could stay hydrated with a nurse coming to care for her, as well as have the essential nutrition she so desperately needs. We are on our second appeal with her insurance. Consequently, she is hospitalized way more than necessary."
Pacemaker?
Rushton will soon have a tube put in to relieve pressure and drain parts of her stomach. She hopes to have a pacemaker inserted into her stomach to stimulate the muscles to work again.
"We found a doctor in St. Louis that will do the pacemaker if Chelsea meets his criteria," Petersen said. "We are in the process of getting her out there. This is an extremely expensive procedure, and we are not sure her insurance will pay for it. Finding some quality of life without this option is so sad."
Gentrie Hansen, 14, of Draper, had a pacemaker implanted in July to help her deal with the same condition.
Petersen said she spoke with Gentrie's mother about it last week.
"Gentrie is doing better. She's put on about 15 pounds, which is terrific. She goes to school for a few hours in the morning and then comes home," Petersen said. "She has had some trouble with her stomach tube since being home, but that is not abnormal. These tubes are not fun. Her father is taking her back in a week or two for a checkup."
Petersen said doctors at Nationwide Children's Hospital in Ohio performed Gentrie's procedure, but they only see patients up to the age of 22, which disqualified Rushton.
"I was devastated, but then referred to the St. Louis doctor," Petersen said. "Gentrie's case has been published nationally in the last few weeks.
"Even with the pacemaker in, life is still very fragile, and we wish her the best. We are so hoping that Chelsea will get the same opportunity," Petersen said.
Rushton's symptoms began with a feeling of pressure in her stomach. She thought it might be heartburn.
During the delivery of her daughter, the pressure became so intense, two shots of painkillers would not ease the pain, her mother said.
Long diagnosis
Shortly after delivery, the pain became worse and intensified with every drink of water or bite of food. Four months later she received a diagnosis.
"Frequent trips to the ER and hospital became routine," Rushton wrote on her blog. "Social activities are non-existent because most of them involve food. If you do go out you end up ordering water, maybe a soda and pulling that pack of crackers out of your purse to nibble at."
Rushton and her husband, Jeremy, married at a young age. Because she also had polycystic ovarian syndrome as well as endometriosis she ultimately had to have a total hysterectomy.
"She was told she would have a problem having children," Petersen said. "Chelsea met her husband very young but was extremely blessed because had she not met him at that point in her life, she would not have the children she has."
Jeremy said watching his wife go through this is extremely difficult.
"It's never easy to watch the one you love suffer, knowing that there isn't anything within your power that you can do to make it better," he said. "Seeing her with the uncertainty of what the future holds, not knowing what the ultimate prognosis is, is very difficult."
Jeremy also said his wife would love nothing more than to be more active with their children, ages 4 and 2, but the family is staying strong.
"With this kind of adversity in life, a wife needs a steady hold of something, and rocks can slide, so you need to be sturdy as a mountain for her," he said.
For now, Rushton continues to struggle. She is in the hospital often and the emergency room every couple of weeks.
"She has absolutely no quality of life," Petersen said. "Her little babies see her a maximum of maybe an hour a day. She spends her days in bed wanting so badly to be up. Basically, the only time Chelsea really does go out is to Walmart to get more meds."
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