Walt Breidigan lies in a hospital bed in room 26 at St. Clair Hospital. Tubes come out of his arms and wires are attached to sticky pads on his chest. His wife, Nancy, strokes his face. A gang of doctors and nurses frantically hooks up medical equipment.
Everyone tries to avoid the movie camera at the foot of the bed.
"Walt, watch the smiling! Walt, no smiling!" Cameraman Tom Donatelli yells.
The smiling stops, replaced by a look of fear.
But then, Mr. Breidigan has had cause to hone that look.
Mr. Breidigan's act -- and very real disease -- is for an episode of "Mystery Diagnosis," a show on the Discovery Health Channel. He was chosen after a producer for the show stumbled on the disease while searching online for rare disorders.
Although Mr. Breidigan, 52, of Bethel Park, is "not a limelight person," a television crew was at St. Clair Hospital on Friday to film a re-enactment of his hospitalization and diagnosis.
Mr. Breidigan's real life story began on Feb. 4, 2005, when he was taken to the emergency room at St. Clair Hospital after passing out at his home. His blood pressure plummeted as fluid leaked out of his veins and began filling his lungs. He went into septic shock and almost died. But after he was stabilized, no one could tell him why it happened.
"They really didn't know what happened to me at the time. After two weeks in the ICU, I was stabilized but no one had a clue what happened," he said.
Before his hospitalization, Mr. Breidigan had flu-like symptoms and some family members also had been ill. Doctors, unable to pinpoint exactly what was wrong, supposed that two viruses had combined and caused his symptoms.
"Viruses can cause any type of abnormality," said Dr. Gregory Fino, co-director of critical care services at St. Clair Hospital and one of Mr. Breidigan's doctors.
Mr. Breidigan was eventually discharged and life returned to normal until 2007 when, during Christmas week, he again was taken to St. Clair Hospital after fainting. His blood pressure again had plummeted.
It was like a repeat of his 2004 visit except, this time, Mr. Breidigan's body inflated. The fluids administered to keep his blood pressure steady had nowhere to go. As a result, Mr. Breidigan gained 105 pounds in 24 hours. His bicep measured 191/2 inches around.
"My skin was like steel. It was very painful to touch," Mr. Breidigan said. He was put on morphine for the pain and remained swollen for nearly a month..
During Mr. Breidigan's hospitalization, Dr. Fino diagnosed him with systemic capillary leak syndrome, a disorder so rare there are only 32 known cases worldwide.
Individuals with CLS suffer breakdowns in the integrity of their capillary wall, allowing the fluid inside the blood vessels to leak out. Because the vessels cannot contain the amount of fluid, blood pressure plummets. The result of untreated sudden and drastic loss of blood pressure is shock and organ failure. To keep blood pressure in a normal range, doctors use an IV to pump replacement fluid into the blood vessels. The added fluid keeps the blood pressure up but, if the capillary walls are still damaged, the leaking continues and swelling can result.
Although capillary leak syndrome can happen to individuals with sepsis or some forms of cancer, patients with CLS suffer chronic bouts of this cycle.
The disease is difficult to diagnose and, because of that, is often fatal. Little is known about it, and there is no prescribed treatment and no cure.
Dr. Fino made the diagnosis after a review revealed the original case, documented in 1960.
But case files offered only "anecdotal treatments," treatment suggestions that seem to work but have not been clinically researched. Dr. Fino based Mr. Breidigan's treatment on that of another patient with CLS.
"My feeling was, if I don't do something, he might die," Dr. Fino said. "I was a lucky doctor who made the right diagnosis."
When Mrs. Breidigan, 50, first heard the diagnosis, she was relieved to have an answer to what was causing her husband's symptoms. But then she researched the disease online.
"I was terrified," she said.
Since the diagnosis, the Breidigans' lives have changed drastically. Mr. Breidigan needs intravenous treatment every two weeks or so, to keep from crashing. He keeps medical records in his car, carries doctors' notes in his wallet and wears a silver bracelet engraved with his diagnosis and treatment. The rarity of the disease means other hospitals may not administer the right treatment, so the family can no longer travel more than two to three hours from Pittsburgh in order to be close to St. Clair Hospital.
"This is a great place, but we're just stuck. We vacation in Columbus [Ohio] now," Mr. Breidigan said.
An engineer by trade, he is bothered most that he tires easily.
"I've always done everything at my house myself. I roofed my house, put siding up, worked on cars. But I get tired real quick with the medication. That kind of agitates me."
"It's been a nightmare," Mrs. Breidigan said.
But his hospital visit last week isn't like most of them. Mr. Breidigan joked about not having a changing room and greeted Dr. Fino with a smile and hug. His daughter, Lindsay, took pictures and chatted with the extras and makeup artist. Mrs. Breidigan changed her shirt three times.
"Oh yeah, that says hospital," Lee Doyle, the episode's producer, said when a nurse offered to roll an IV into Mr. Breidigan's room.
A body double, Jason Stolicta, was brought in to re-create scenes of when Mr. Breidigan was grossly swollen. Mr. Stolicta was wheeled into the hospital room, a towel covering his head and face.
Working from pictures of another patient with CLS, makeup artist Joe Blasco re-created Mr. Breidigan's swollen face using parts of five prosthetic faces. Mr. Blasco began Mr. Stolicta's makeup at 5:30 a.m. and finished four hours later. In addition to the swollen face, Mr. Stolicta also wore fake arms and hands.
"The arms are from 'The Tracey Ullman Show.' They were used for a sumo wrestler," Mr. Blasco said.
When Mrs. Breidigan saw the double, she gasped and turned away.
"It looks exactly like Walt," she said.
Re-enacting the first day of the "nightmare" was not easy, but Mrs. Breidigan said she did it to "get my point out there and so people know how hard it is."
The episode has no set date, but will air between January and March. "Mystery Diagnosis" airs each Monday at 10 p.m. on Discovery Health.
Kate McCaffrey can be reached at firstname.lastname@example.org or 412-851-1867.