Rare disease could stop shop owner | ParkRecord.com

Rare disease could stop shop owner

Robert Sorenson had everything going right when he woke on the morning of July 22.

The day before he had set a personal record in a competitive cycling race. He had just bought a new business, Pirata Coffee, and the weather was perfect for working on the new building space at Kimball Junction. Although he had already been working on the building for a month, he still had work to be done and only weeks until he planned on opening.

In the afternoon he went shopping at the Home Depot in Salt Lake City, but he felt a sudden pain in his abdomen a pain so severe he almost fell down. He thought had had food poisoning, so he drove to his brother’s house, which was nearby, to wait it out.

After about 30 minutes, the pain became so intense that he decided to drive home to Park City, but he only made it a few miles before he pulled off the road to call his wife. She told him to go to the nearest hospital, which happened to be St. Mark’s.

Doctors ran myriad tests, immediately ruling out kidney stones or any kind of bladder infection. By 3 a.m. doctors diagnosed him with mesenteric ischemia, a rare disease where the bowels do not receive enough blood to survive.

Because St. Mark’s did not accept Sorenson’s insurance, they sent him by ambulance to LDS Hospital, who took him into the ER. The new doctors did not immediately concur with the diagnosis because those afflicted are generally over 60 and Sorenson was a healthy 36-year-old.

"They said I should have been about 60 to have this condition, and even at 60 and 70 it’s extremely rare," Sorenson said. "They thought it was kidney stones or something. They just wanted to give me some Loritab and send me home."

They re-ran many of the same tests, and, by late morning, admitted Sorenson with the same diagnosis. Time was of the essence, because the loss of blood to the bowels causes them to die quickly. Luckily for Sorenson, the doctors responded in time and no organs were lost.

"One doctor said it’s like a grenade inside you," he said. "You’re fighting to save your bowels. It’s a hard thing to diagnose because it’s so rare and the symptoms are odd, which is why the mortality rate is so high."

Sorenson had to take time away from preparing to open Pirata Coffee, as he stayed in the hospital for a week, most of the time in the intensive care unit.

"What was amazing is how out of the blue it was," he said. "One day I’m setting a personal best in a bike race, and the next day I’m in intensive care."

Sorenson said he had to delay the opening of the shop, but he was happy to finally open on Sept. 4. Things were starting to get back to normal, although he could no longer do many of the activities he once enjoyed. He had to stop cycling, mountain biking, water skiing and short-track skating because the anti-coagulants he takes causes his blood to clot three times slower than normal. He said a simple fall could kill him.

The new business took up most of his time anyway. He and Melissa Sorenson, his wife, spent most of his time getting a client base and trying to get the business going, but more bad news was on the way. His insurance turned down part of his claim and with a chance of reoccurrence, he would likely not be able to qualify for an individual insurance plan again.

"Once we got open that’s when we started getting more into the medical costs," he said. "It’s hard when the insurance company says they won’t cover certain things. I’m also excluded from getting any personal insurance, so I’m going to have to get back into the corporate world so I can get on a group insurance plan."

"I have got a 25 percent chance of reoccurrence, so it’s a lot more serious than we first thought," he said. "Because of that chance, we have got to find the root cause, which is why I will most likely have to go back to the Mayo Clinic."

Because he needs to travel to Minnesota for treatment, on top of insurance issues, Sorenson now plans to sell the shop, just over a month after he first opened it.

"We have great employees who have experience running a coffee shop. They help a lot," he said. "But the plan now is to probably sell the shop. The capital we had will be completely engulfed in medical costs."

Sorenson said he is currently discussing a selling price with a broker, but he expects to take a loss on the venture, fearing that continuing would only further the damages.

He said the shop is doing well, partly because of it’s high quality product and unique atmosphere.

"We’re essentially a coffee shop, but not a traditional one," he said. "We carry a couple different beans; one from Italy and then Ibis out of Logan, Utah. We carry H&H bagels out of New York, as well as pastries that we get from a Scandinavian bakery in Salt Lake. The pastry makers tend to err on the side of butter, so they’re really good."

When the store opened, he said, not only did he want to carry a high-end product, but he also wanted to create a different type of atmosphere.

"We wanted to do something totally different," he said. "It’s not you’re typical cookie-cutter coffee shop. The walls painted so it looks like there are a lot of buildings on the side. We wanted to create the feel that you’re in a plaza in Italy. Most coffee shops have the tan, wood walls with a couple of couches and tables with green lights hanging down from the ceiling. We didn’t want to do any of that."

Pirata Coffee is located at 1612 Ute Blvd. and can be reached at (435) 649-0034. The store is open seven days a week from 7 a.m. to 6 p.m.

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