Joan Isa: Hiatal Hernia, GERD, Indigestion
Now, I tell people to be their own advocate and check your own medical records. But for the first time, Lisa had good news: A corrective surgery could relieve symptoms by rerouting food through a new passageway and bypassing the blocked intestine. But first, she had to gain weight — and strength.
For a few months, Lisa was able to keep down the foods she gradually reintroduced into her diet, even though she still had pain. I still couldn't eat large portions, but I didn't have any food restrictions. But in May, the vomiting returned. A barrage of tests showed no additional explanations. To keep her malnutrition at bay, a nasal feeding tube was put in, followed by one surgically inserted into her stomach, and then finally a vascular feeding system.
But still, she kept wasting away. For 20 hours a day, Lisa is hooked up to the vascular feeding system through a port in her chest.
After a restless night's sleep, her nutrient infusion ends at 8 a. When Patrick, an engineer who travels frequently for work, is home, the couple go to their favorite coffee shop.
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A home, she's back on the pump — and on the phone for hours. Her mother, Patricia Neuhauser, lives nearby, so when Patrick is on the road, she comes over to help her only child. I'm blessed to have her and I'll never ever take her for granted. They already see me and make a judgment. I might as well put it to good use. In March, she booked the first available appointment for July They got her an earlier appointment, and a local business flew Lisa, who was too weak to take a commercial flight or drive, on their company jet for free.
At the hospital, Lisa met with Dr.
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Matthew Kroh, director of surgical endoscopy. Their goal was to combat her malnutrition and find out what else was wrong besides her SMAS. After she gained 6 pounds bringing her weight to 94 pounds , doctors performed a test with a SmartPill, which was placed endoscopically in her stomach and traveled her intestinal tract, communicating hormone and vitamin levels, acidity, and digestion time. In early July, she got her second diagnosis: gastroparesis.
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While research on the causes of gastroparesis is limited, Lisa says it can be triggered by abdominal surgery. The couple admits that the last several years haven't been easy on their marriage. Now, I need everything done for me. But Patrick, who's a problem-solver by nature, struggles with the inability to fix this.
I feel extremely guilty that more than half of our marriage has been illness. While that's challenging, Patrick's concern is naturally for his wife. It's the hardest thing I've ever had to go through," Patrick says. Being gone so often doesn't help: "It's constantly on your mind that your wife is dying but you need to pay the bills.
I worry daily, leaving and not knowing what could happen. He admires Lisa's strength and willpower — and tells her she's beautiful all the time. She just wants to survive and spread awareness of this horrible illness so that maybe somebody else doesn't have to go through it. Though the pair has good insurance through Patrick's job, the bills keep adding up — especially because much of Lisa's care is specialized and often not covered.
Her family has created a GoFundMe page to help with the costs. On July 15, she had a surgery at the Cleveland Clinic to put in a rejejunostomy feeding tube, which will give her more freedom to move around. Patrick says the surgery was successful. Because he was on a job site in Denver, her mother went with her. Then they will do some more testing. Watch his absolutely outstanding short talk on high-dose vitamin C therapy.
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