A Survivor's Story
By Michael Gibbons

What Bob Berendt called "the whole mess" began in July of 1997. He thought he had the flu.

Berendt, 43, had just moved to Grand Rapids, Mich., from Florida. Watching TV one night, he "went totally delirious." He had a 105-degree temperature. His girlfriend, now wife, Monica, called 911. ER physicians at Blodgett Memorial Hospital in Grand Rapids diagnosed a perforated ulcer.

While en route to get a CT scan, Berendt went into respiratory failure. "They couldn't figure out why," he said. "They gave me less than a 5-percent chance of surviving the night."

Physicians at Blodgett contacted the extracorporeal membrane oxygenation (ECMO) unit at the University of Michigan Medical Center in Ann Arbor. Personnel from that unit flew to Grand Rapids and hooked the now-comatose Berendt to a portable ECMO device. They wrapped him in aluminum foil to keep him warm and flew him to the medical center, where he came under the care of Robert Bartlett, MD.

Berendt was in desperate straits. He was placed in a drug-induced coma and paralyzed so he wouldn't use muscles and absorb oxygen. He remained on ECMO, the modality of last resort. He was also on mechanical ventilation at six breaths per minute to keep his lungs moving so they wouldn't harden. As if that wasn't enough, he had to be placed on dialysis, too: His liver and kidneys had failed.

"They did some trial periods off ECMO," he recalled, "and just the movement of my tongue alone dropped my oxygen level so low they had to put me right back on it."

The ECMO unit breathed for Berendt for a full 10 days. It saved his life. "What an incredible piece of technology that is," he marveled.

While on ECMO he had 17 IV lines giving him antibiotics. By systematically running cultures on him and by questioning his girlfriend about their recent whereabouts, clinicians gradually weaned him off each antibiotic, one at a time, until they located what they thought was the problem.

"They determined it was diverticulitis that started the whole mess, but they're not 100 percent sure," he said. "The diverticulitis caused septic shock. That's why I went into respiratory failure."

Berendt remained ventilated another three or four weeks after ECMO. Altogether, he was hospitalized from July to the end of September.

AFTER EFFECTS

By the end of his ordeal, Berendt had lost 80 pounds. He had little muscle mass left; he said he was just "skin hanging off bone." When the medical center's rehab program proved too strenuous for him, he went for rehab at a local nursing home.

Today, living at home on disability, he said he has "bounced back fairly well, better than most." He has no lung scarring or other pulmonary damage, although his lung capacity is 60 percent of normal. He has no sense of balance because one of the antibiotics he received produced a side effect called vestibular toxicity that killed the hair cells lining both inner ears. "It's gotten a lot better over the last four years. My brain has compensated," he said.

In addition, Berendt's entire spine is fused from a rare form of arthritis called ankylosing spondilitis, so he can't turn his head. Still, he can drive, mow his yard and walk short distances for exercise.

Berendt said he has sustained "definite and permanent" cognitive losses. "I can tell, and my wife can, too," he said. "I was very quick before all this. Now I'll leave out half a sentence when I type out an e-mail and say words I didn't mean to say. I have quite a bit of memory problems." He gave up a job as a 911 operator in Lake County, Mich., because "I was afraid I would get somebody killed," he said.

Any emotional scarring seems to have evaporated, though. Some patients come off ECMO with a complete 180-degree turnaround in personality, Dr. Bartlett told him. Berendt suffered no such post-traumatic symptoms although he did have nightmares while hospitalized.

He doesn't remember if the ICU environment was noisy or stressful, a common complaint of many ARDS survivors looking back. "I was so doped up on morphine I didn't care what happened," he said. "One time I could have sworn someone was sneaking in and popping open a can of beer. They were actually replenishing my feeding bag."

MOOD SWINGS

As for depression, Berendt said he became morose when he first showed up for rehab. "Why even try to get through this?" he asked himself. Before long, signs of physical improvement put him in a better frame of mind. His mood sunk again after rehab when he settled into home life, confined to a wheelchair temporarily, confronted with great chunks of idle time. Nevertheless, a single, highly productive visit to a psychologist, he insisted, adjusted his attitude toward the glass-half-full outlook of his former life.

Now, after discovering a network for ARDS survivors called the Ards Support Center and becoming its secretary, Berendt's emotional up-and-down ride has smoothed out.

"For the longest time, I tried to figure out why I had survived this whole mess when kids die on ECMO all the time," he said. "Then I found the ARDS network. I look at life in a whole different way now. I appreciate it more. I take time to look at the little stuff."

At the nursing home, he recalled watching a 20-year-old man play accordion in the cafeteria to an appreciative audience of elderly folk. "He was giving his time to bring some life to these older people," Berendt said. "I was just amazed at how a half-hour of that made those people's weeks. That's what I notice now."

Michael Gibbons is senior associate editor of ADVANCE.

A Tale of Triumph

Every time Joe Saggese goes back to the University of Pennsylvania Medical Center, the nurses shake their heads in awe when they see him. The 47-year-old spent a harrowing four months in the medical intensive care unit from December 1998 to April 1999, battling acute respiratory distress syndrome.

"My doctors tell me my case is so far worse than any they've seen before or since," said the Washington Township, N.J., resident. "Much of that time I was in a medically induced coma."

The contents of Saggese's perforated stomach ulcer resulted in a severe systemic infection, or sepsis. The condition was the probable cause of his ARDS.

"My family had been called and told my condition had worsened and it wasn't likely that I would make it through the night," he said. "I'm told that happened at least four times."

After a long and painful hospital stay, Saggese finally returned to the comforts of home. He sees life in a whole new way since his release.

"I was a high performance financial executive, constantly under the stress of tight deadlines," he said. "Those kinds of things aren't important anymore. It's a different world."

Because of his restricted lung capacity, Saggese must lead a much more sedentary lifestyle now. He often sits at his computer, looking at the work of contemporary artists on the Internet.

He enjoys spending time with his wife and two children, who all stood firm by his side through the ordeal.

"Without the vigilance, love and outpouring of help from my family," he said, "I would have never made it."

—Mike Bederka