Terry Berger’s life is limited by the same thing that keeps her alive.
Each day, Berger, 68, faces the choice of either staying in her compact Arroyo Grande apartment, with little company other than her two cats, Pismo and Tabby, or hoisting around a cumbersome black backpack that’s never far from her side.
Her list of annoyances with the accessory, connected to her side via a long, thin tube, is straightforward: The backpack causes back problems. It’s never quiet, always humming. She gets wrapped up in the tube. She steps on the tube.
But it’s either that or starve.
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The backpack holds her feeding pump and liquid food supplement — the only sustenance Berger gets since she became unable to eat solid and even liquid foods in the wake of a debilitating condition called chronic pancreatitis. She must be connected to the device at least 16 hours a day.
“It’s lifesaving, but it’s horrible,” she said as she placed the backpack on her lap. “You’re never free. You’re tied to this machine.”
Berger briefly thought she would be able to escape the encumbrance. She learned that a procedure to remove and replace her pancreas with insulin-producing cells could cure her of her symptoms and allow her to cast off the backpack that’s become her constant burden.
That hope was dashed when Medicare denied the request to cover the dual procedure. Now she’s taking matters into her own hands and raising money to pay for the surgery herself.
“I just don’t want to live this way,” she said, holding back tears.
Berger, a former caregiver who has been unable to work because of her illness, is hoping to raise $65,000 to pay for the surgery and living expenses. Her daughter began a GoFundMe account in January that has to date raised $23,714 for Berger’s medical expenses.
“The scary thing is I’m only a third of the way there,” Berger said. “And I need the other two-thirds.”
A chronic condition
Berger’s troubles began in 2003, after she had her gallbladder removed. She was experiencing pain in her abdomen that her doctor diagnosed as pancreatitis — inflammation of the pancreas that in Berger’s case closed the duct that connects the organ to the rest of her digestive system.
The pancreas has two functions: It produces enzymes to help with the digestion of food, and it releases insulin and glucagon into the blood stream to help control blood sugar levels. When the digestive enzymes are unable to escape the pancreas through a duct into the small intestine, those enzymes begin attacking the organ, leading to pain and problems with the digestive system.
For the next several years, the problems would continue. Finally, Berger had a stint put in at a hospital in Los Angeles that was designed to keep the duct open, even if she experiences inflammation. The stint caused her more pain, so that she was unable to drink even her liquid diet, Berger said.
“The pain was unbearable,” she said. “(My doctor) kept telling me that it was coincidence. He had done his job and fixed my pancreas, and the pain was just a complete coincidence, unrelated to my pancreas — even though I knew the symptoms of throwing up and the exact pain.”
Finally, Berger was referred to a pancreatic specialist at the University of Indiana who diagnosed her with calcification in her pancreas.
It was at that time that Berger’s feeding tube was put in. After several months attached to the feeding pump, she was told to try eating solid food again. If she couldn’t, her doctor said she would need to have her pancreas removed.
It didn’t work.
“I tried eating, and I got in pain very quickly,” she said. “So I have to have that surgery.”
A life-changing procedure
Berger’s doctor recommended she undergo pancreatectomy and an auto-islet transplant — essentially, her pancreas would be removed and her insulin-producing cells would be transplanted into her liver, where they would remain and grow. The procedure would remove most of Berger’s painful symptoms, and could allow her to eat again.
The only problem is that Medicare — Berger’s insurance — doesn’t cover both parts of the procedure. It only covers the pancreatectomy.
“I’ve never been able to get an answer why it doesn’t cover both,” she said. “No doctor that I’ve talked to or hospital recommends that you do the pancreatectomy without the transplant, or you’ll become a very ill diabetic.”
The second procedure costs $55,000 at UC San Francisco Medical Center — where Berger would likely undergo the surgery — and the hospital requires the money be paid upfront.
She’s already reached out to national organizations that help pay medical expenses, and plans to reach out to local service clubs for their aid.
Berger hopes to be able to raise the money in time to have the procedure this summer, so she can return to her life.
“I feel really bad, because (my daughter) doesn’t have the mother she used to have,” Berger said.
Her daughter is currently pursuing a doctorate in environmental science at UC Berkeley.
“She would call me when she was having problems, or feeling bad, and I could help her and we could talk. I know she isn’t comfortable doing that anymore,” Berger said. “We used to have these wonderful, fun conversations, and I’m not in a wonderful, fun mood anymore. So that’s really difficult.”
Besides reconnecting with her daughter, Berger said she hopes to return to caregiving, her knitting groups and, most importantly, eating again.
“This is awful, but I used to be a really healthy eater,” she said, as she wiped away the tears that had finally fallen. “Now sometimes, just seeing a McDonald’s commercial, I would die for McDonald’s.”