Mentone Family Battling Medical Problems, Financial Hardship
July 28, 2016 at 4:25 p.m.
By David [email protected]
Amy Noth-Reed and Ed Reed have been dealing with the “poorer” and “sickness” part of that vow for several years now.
The Mentone couple have four children, but Amy’s medical conditions may have started when their last two children were born.
Daughter Whitney was born in 1992, three months early, at 1 pound, 13 ounces. She was in the hospital for about three months. Mikaela was the last child, and she was born eight weeks early. She also was in the hospital for about three months.
“That’s kind of where things started, with the girls,” said Amy during an interview Thursday afternoon.
“The doctors think that’s where things started with Amy’s Lupus,” Ed said.
She was diagnosed with Systemic Lupus Erythematosus in 2007. It is an autoimmune disorder that can be genetic or brought on by trauma.
Amy said she was diagnosed at the Mayo Clinic, Rochester, Minn., and by her family doctor who is no longer practicing.
It started with her heart beating irregularly. Her doctor did the normal tests and realized Amy’s heart rate was out of whack. But he refused to send her to the Mayo Clinic.
Then one day she passed out at home, only to be awaken by her barking dog. She scraped her arm during the fall.
At her next visit to the doctor, he sent her to the Mayo Clinic. She went three times before being diagnosed with Lupus.
Amy had been working at Tippecanoe Valley Schools, but there was a brief time she wasn’t able to work. She went back in 2008 through 2009.
In October 2009, during their son’s football game at Whitko, Amy started coughing and couldn’t quit. She turned blue, and ended up at Woodlawn in Rochester. She stayed two days.
At first, they thought Amy had asthmatic bronchitis, but she was told to get the H1N1 vaccine, which she got that Monday, Oct. 16. The next day, she was running a 103-degree fever. By Wednesday, she was back in the emergency room. They told her it was viral, and sent her home with a bag of saline.
At 2 a.m. Friday, she was yelling for Ed and her daughter. Her fever reached 105.8 degrees.
“Her entire renal system shut down,” said Ed.
On Oct. 24, Ed took Amy back to Woodlawn. At first, Amy said, the hospital staff was rude to her because they “already told me it was viral.” A chest X-ray was done anyway and blood was drawn.
Once the X-ray was done, the hospital staff went into a flurry. The female doctor told Ed she was taking Amy into custody because she thought Ed hadn’t been doing enough to take care of Amy. Her lungs were filled with fluid. A social worker and chaplain were called, and Amy was taken to Fort Wayne.
Amy recalls asking the chaplain if she would make it. He replied he didn’t know.
“They started testing as soon as she hit the floor (at the Fort Wayne hospital), because a gentleman had just died of H1N1,” Ed said.
Amy went into a coma, and remained in the coma from October through January.
“During that time, my kidneys failed so they put me on dialysis. I had a trachea tube put in. When I woke up, I was pretty much paralyzed,” Amy said. [[In-content Ad]]Every day while she was in a coma, Amy was tested for H1N1. On the eighth day, it came back positive.
“By that time, she already was in a coma and on life support. The ventilator was maxed out at that point and couldn’t go any higher. It was just a constant fight,” Ed said.
Amy was the last of 10 people to qualify for experimental medication from the Centers for Disease Control and Prevention. Of the 10 people, Ed said Amy was the only one to survive.
After waking up and leaving Lutheran Hospital, Amy was moved to Select Rehab Hospital at St. Joe Hospital in Fort Wayne.
In February 2010, Amy had a stroke and went back into a coma for 3-1/2 weeks.
“That was probably the closest we came to losing her,” Ed said.
Amy was completely aware of what was going on at the time around her, but she couldn’t communicate with anyone. It was when her father and brother flew in from South Dakota to see her, and her father spoke to her, that Amy was then able to mouth words.
Once she was fully awake, Amy was moved to Lutheran Rehab for 1-1/2 months. She had to learn to walk, talk, dress herself and brush her teeth.
During her hospital stays, social workers were able to help Ed and Amy get Medicaid and Medicare. With her renal failure, Amy was on disability so she got 100 percent coverage.
About 1-1/2 months ago, however, she was put on “spin down” by Medicaid, which meant that the couple would have to start paying about 20 percent of their hospital bills. Even though Medicaid and Medicare already OK’d Amy for a kidney transplant from her brother, they want the Reeds to pay for some of the costs.
That’s money the Reeds don’t have, as Amy can’t work and Ed just got a new job about a month ago. This week, Ed had to have surgery on both his arms.
They have to reapply and go through the whole process again to try and get Amy back on 100 percent coverage.
“Lots of people see Amy and think she’s doing great. But they can’t see the Lupus or the renal failure,” Ed said.
Amy also said people can’t see the other effects of all of this – emotional and psychological.
Before Amy can get a kidney transplant, she has to have gastric bypass surgery because the transplant team wants her body mass index to be at a certain level. Since they can’t afford for Amy to go to the YMCA, they have been coming up with different ways for her to work out.
“We are fighting for Amy’s life,” said Ed. “I will do what I have to do.”
Being her caretaker is a full-time job, Ed said.
“No one makes concessions for the family member who has to stay home and take care of a loved one,” he said. “She can’t work because of her disability and everything else. We never asked for a dime for anyone.”
Someone anonymously helped the Reeds with an overdue high water bill.
“I want to thank them so much whoever that was,” Amy said. “It was huge. It helped.”
“They definitely helped us out in a situation where our finances are non-existent,” said Ed. “Someone coming in to pay the water bill was like winning the lottery to us.”
Amy said they are blessed in another way. They have four children, sons-in-law and two grandchildren. Family members have helped them as they could, but they have limited resources of their own.
“We have to do everything we can to save her life,” Ed said.
Amy Noth-Reed and Ed Reed have been dealing with the “poorer” and “sickness” part of that vow for several years now.
The Mentone couple have four children, but Amy’s medical conditions may have started when their last two children were born.
Daughter Whitney was born in 1992, three months early, at 1 pound, 13 ounces. She was in the hospital for about three months. Mikaela was the last child, and she was born eight weeks early. She also was in the hospital for about three months.
“That’s kind of where things started, with the girls,” said Amy during an interview Thursday afternoon.
“The doctors think that’s where things started with Amy’s Lupus,” Ed said.
She was diagnosed with Systemic Lupus Erythematosus in 2007. It is an autoimmune disorder that can be genetic or brought on by trauma.
Amy said she was diagnosed at the Mayo Clinic, Rochester, Minn., and by her family doctor who is no longer practicing.
It started with her heart beating irregularly. Her doctor did the normal tests and realized Amy’s heart rate was out of whack. But he refused to send her to the Mayo Clinic.
Then one day she passed out at home, only to be awaken by her barking dog. She scraped her arm during the fall.
At her next visit to the doctor, he sent her to the Mayo Clinic. She went three times before being diagnosed with Lupus.
Amy had been working at Tippecanoe Valley Schools, but there was a brief time she wasn’t able to work. She went back in 2008 through 2009.
In October 2009, during their son’s football game at Whitko, Amy started coughing and couldn’t quit. She turned blue, and ended up at Woodlawn in Rochester. She stayed two days.
At first, they thought Amy had asthmatic bronchitis, but she was told to get the H1N1 vaccine, which she got that Monday, Oct. 16. The next day, she was running a 103-degree fever. By Wednesday, she was back in the emergency room. They told her it was viral, and sent her home with a bag of saline.
At 2 a.m. Friday, she was yelling for Ed and her daughter. Her fever reached 105.8 degrees.
“Her entire renal system shut down,” said Ed.
On Oct. 24, Ed took Amy back to Woodlawn. At first, Amy said, the hospital staff was rude to her because they “already told me it was viral.” A chest X-ray was done anyway and blood was drawn.
Once the X-ray was done, the hospital staff went into a flurry. The female doctor told Ed she was taking Amy into custody because she thought Ed hadn’t been doing enough to take care of Amy. Her lungs were filled with fluid. A social worker and chaplain were called, and Amy was taken to Fort Wayne.
Amy recalls asking the chaplain if she would make it. He replied he didn’t know.
“They started testing as soon as she hit the floor (at the Fort Wayne hospital), because a gentleman had just died of H1N1,” Ed said.
Amy went into a coma, and remained in the coma from October through January.
“During that time, my kidneys failed so they put me on dialysis. I had a trachea tube put in. When I woke up, I was pretty much paralyzed,” Amy said. [[In-content Ad]]Every day while she was in a coma, Amy was tested for H1N1. On the eighth day, it came back positive.
“By that time, she already was in a coma and on life support. The ventilator was maxed out at that point and couldn’t go any higher. It was just a constant fight,” Ed said.
Amy was the last of 10 people to qualify for experimental medication from the Centers for Disease Control and Prevention. Of the 10 people, Ed said Amy was the only one to survive.
After waking up and leaving Lutheran Hospital, Amy was moved to Select Rehab Hospital at St. Joe Hospital in Fort Wayne.
In February 2010, Amy had a stroke and went back into a coma for 3-1/2 weeks.
“That was probably the closest we came to losing her,” Ed said.
Amy was completely aware of what was going on at the time around her, but she couldn’t communicate with anyone. It was when her father and brother flew in from South Dakota to see her, and her father spoke to her, that Amy was then able to mouth words.
Once she was fully awake, Amy was moved to Lutheran Rehab for 1-1/2 months. She had to learn to walk, talk, dress herself and brush her teeth.
During her hospital stays, social workers were able to help Ed and Amy get Medicaid and Medicare. With her renal failure, Amy was on disability so she got 100 percent coverage.
About 1-1/2 months ago, however, she was put on “spin down” by Medicaid, which meant that the couple would have to start paying about 20 percent of their hospital bills. Even though Medicaid and Medicare already OK’d Amy for a kidney transplant from her brother, they want the Reeds to pay for some of the costs.
That’s money the Reeds don’t have, as Amy can’t work and Ed just got a new job about a month ago. This week, Ed had to have surgery on both his arms.
They have to reapply and go through the whole process again to try and get Amy back on 100 percent coverage.
“Lots of people see Amy and think she’s doing great. But they can’t see the Lupus or the renal failure,” Ed said.
Amy also said people can’t see the other effects of all of this – emotional and psychological.
Before Amy can get a kidney transplant, she has to have gastric bypass surgery because the transplant team wants her body mass index to be at a certain level. Since they can’t afford for Amy to go to the YMCA, they have been coming up with different ways for her to work out.
“We are fighting for Amy’s life,” said Ed. “I will do what I have to do.”
Being her caretaker is a full-time job, Ed said.
“No one makes concessions for the family member who has to stay home and take care of a loved one,” he said. “She can’t work because of her disability and everything else. We never asked for a dime for anyone.”
Someone anonymously helped the Reeds with an overdue high water bill.
“I want to thank them so much whoever that was,” Amy said. “It was huge. It helped.”
“They definitely helped us out in a situation where our finances are non-existent,” said Ed. “Someone coming in to pay the water bill was like winning the lottery to us.”
Amy said they are blessed in another way. They have four children, sons-in-law and two grandchildren. Family members have helped them as they could, but they have limited resources of their own.
“We have to do everything we can to save her life,” Ed said.
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