Survivor’s story highlights need for new ICU support group

January 10th, 2018
A major heart attack at age 40 sent him to the ICU in October 2016. Jason Levi aims to help others with life after the ICU through UCHealth Medical Center of the Rockies’ new monthly ICU Survivor and Family Support Group.

It was a pleasant Sunday in October. Jason Levi was playing tennis with a friend at Fossil Creek Park in Fort Collins. Busy with his job and helping raise a two-and-a-half-year-old daughter, his exercise regimen had been limited to brisk walks with the dogs. He hadn’t played tennis since moving to Colorado a year before. He knew what he was getting into: he had played competitively until he was 15. That was 25 years ago, of course.

He expected to be hurting, but not hurting like this. Maybe it was the altitude.

“I need to sit down,” he told his friend. “I can’t do this.”

Jason remembers none of what came next. His wife Carrie does – all too well.

She was working on her real estate license. As she wrapped up a six-hour study session, the phone rang. She answered, listened briefly, hung up and drove to the park, fast. Her husband lay in the grass with paramedics pressing hard on his chest — twice a second. Jason had had a heart attack, and his heart had stopped. The paramedics might not have had a chance had Scott Brittingham, an off-duty Fort Collins police officer, not happened onto the scene and done CPR.

Paramedics inserted a breathing tube and twice jolted him with defibrillators. The second time, his heart restarted. He was saved again in the UCHealth Medical Center of the Rockies (MCR) Emergency Department, and again more than once in the hospital’s Cardiac Intensive Care Unit over his nine-day stay. He transferred to an inpatient floor and improved to the point that, two weeks after an Oct. 9, 2016 heart attack that is sometimes called the “widow maker” and very nearly lived up to its name, Jason was home again with wife and child.

If this were a TV drama, the uplifting music would be reaching crescendo right about now. If it were a fairy tale, it would be time for “and they lived happily ever after.”

It wasn’t that way. It’s never that way. And that’s why, starting January 17, MCR is launching Colorado’s first ICU Survivor and Family Support Group.

One and two

There’s more to Jason and Carrie Levi’s story, and we’ll get to that. But first, we need to introduce one medical term and two nurses.

Jenelle Baer, left, and Janet Nelson, ICU nurses at UCHealth Medical Center of the Rockies, created the new ICU Survivor and Family Support Group, which launches January 17.

The medical term is post-intensive care syndrome (PICS). The nurses are Jenelle Baer and Janet Nelson. They’re both RNs in the Medical Center of the Rockies Cardiac ICU, and they are the driving force behind an ICU support group that they and the Levis think can make a difference for patients and families who have been through the ICU wringer.

PICS encompasses the diverse physical and psychological woe that often comes in the wake of an ICU hospitalization. Baer and Nelson collected some numbers: 5 million patients spend time in an ICU annually in the U.S. and from half to three-quarters of them will end up with some form of PICS. One-third will exhibit Alzheimer’s-like cognitive effects; the same percentage will struggle with impairments akin to those of traumatic brain injury survivors.  From 25 percent to 75 percent of ICU survivors report depressive symptoms, anxiety, cognitive impairment or post-traumatic stress (PTS). Fewer than one in 10 patients on mechanical ventilation for more than four days is alive and living independently a year later. ICU-acquired weakness – muscle weakness that can persist for a year after leaving the ICU – lingers with a third of patients on ventilators and up to half of those who stay in the ICU for a week or longer.

PICS radiates beyond the patient. Seventy-five percent of family members have anxiety and 42 percent have PTS symptoms.

In addition to caring for ICU patients, Baer and Nelson are working to tackle PICS. They produced a booklet for patients and families with general information about the hospital and even a descriptive photo of an ICU room, taken from the perspective of a patient in bed. It explains what the ventilator is, what the bedside monitor is, even what the curtains are for. The booklet includes a space for a journal for family members to fill out.

“A lot of patients don’t remember much of their time in the ICU,” Baer said. “They fill in the gaps with things that can be scary.” That, she said, can feed anxiety, sleep issues, and post-traumatic stress. It also gives family members a way to help their loved one at a time when they can feel helpless.

Baer and Nelson are also behind the ICU Survivor and Family Support Group, which will meet every third Wednesday at 4:30 p.m. in MCR’s Longs Peak conference room. Such support groups remain a rarity across the country; they believe this one is the first of its kind in Colorado.

“What we’re trying to do is have a time and place where previous patients and the families of previous patients can come together and learn that they’re not alone,” Baer said.

A UCHealth social worker will preside, with Baer or Nelson there, too, in case those present would like to revisit the ICU or have general medical questions, Baer said. Mostly, it will be about patients sharing stories and suggestions. Some whose ICU stays were a year ago or longer are planning on being there, she said.

‘A war’

Jason Levi is one of them. The MCR team threaded a stent into the blocked coronary artery and then put him into a medically induced coma. They chilled his body down to between 90 and 93 degrees (called therapeutic hypothermia) to help his body heal. That lasted for three days. Given the diminished blood flow to Jason’s brain from the heart attack, no one knew whether he had suffered neurological damage. The odds were that he had.

“We didn’t know if he was brain dead and they’d have to pull the plug,” Carrie said.

She did her makeup and hair that morning and drove over to the hospital, where she’d been spending long days.

“I had no idea what a war the ICU can be,” Carrie said. “It’s such a dark, scary, lonely valley of life.”

Jason tracked people’s voices with his eyes; when they removed the ventilator tube, he tried to talk, another good sign. He was, though, at times coherent and at times delirious, which is common. All the time, he was coughing. He had contracted pneumonia while on the ventilator. As the day progressed, it became clear that he wasn’t getting enough oxygen. He spiked a fever pushing 104 degrees. He tore his oxygen mask off and tried to flee during a delirious episode. The ICU team ended up sedating him and putting him back on a ventilator. The hypothermic blankets came back out, this time to cool his raging fever. During those two days, he developed a dangerous fluttering heart rhythm called pulseless ventricular tachycardia. Carrie’s brother Brian Potesta, a Chicago-area firefighter and paramedic, was there that night and as a family member and advocate.

“It was a gnarly whirlwind of a night,” he wrote.

He wrote that in an email that Jason later asked him to write. It was just the sort of journal entry Baer and Nelson suggest be done.

“I wanted to address the situation head-on,” Jason said. I felt that, by addressing it head-on, I would face everything now and let it do the damage that it does now and not keep happening.”

This aligned perfectly with the husband Carrie Levi knew: pragmatic, unemotional, a fighter, “just a rock,” she said. It would take time to regain that strength.

A short, important visitor

He lost 17 pounds in those few days in the ICU, no small amount of it muscle mass. Carrie and the family debated about bringing daughter Olivia in to raise his spirits. They weighed the pros and cons – ICUs can be scary for little ones – and decided Jason needed the emotional boost. So Carrie cued up videos and read books to Olivia about hospitals, the sorts with penguins in lab coats. On the big day, they stopped by the MCR information desk, where a kind volunteer chatted and gave Olivia a coloring book. They had a snack in the cafeteria. It was all exciting stuff for someone on her third revolution around the sun. Then they went upstairs to see daddy.

The nurses had dressed Jason for the first time, and he sat at the side of the bed. Olivia hugged him, but when he instinctively reached down to pick her up, the former Israeli army soldier found he couldn’t lift his own toddler.

Back home, he was “a shell of himself,” as he put it. “Obviously I had stuff going through my head. I was trying to figure things out, but I just wanted to lay down and watch mindless TV.”

Carrie described those weeks as “the darkest and most terrifying of my life.” Jason rarely spoke. When he moved at all, he dragged himself around. He didn’t drive, didn’t handle the finance and other household tasks he had otherwise breezed through, didn’t have the wherewithal to take pills unless she put them and a glass of water in front of him. “It can be like taking care of a baby,” she said.

She took the advice of a senior ICU nurse, who said that, in her experience, maintaining a positive, grateful attitude helped patients recover. The nurse also suggested Jason add a psychological therapy to the standard post-cardiac-ICU prescription of physical therapy, speech therapy, occupational therapy and cardiac rehabilitation.

Carrie accepted help from friends, though reluctantly at first. They brought in meals and mowed the lawn and paid for dog walkers and house cleaners and did lots of other small things that can add up to too much. She hadn’t joined the Stroller Strides exercise group for moms as a hedge against her husband surviving a major heart attack, but the community support they and others chipped in was crucial, she said.

“Not to have to worry about dinner for a month was so huge,” Carrie said. “Jason is the cook. We would have eaten hot dogs for a month.”

With help from various therapy and rehabilitation efforts, Jason focused on recovery. He made – and still makes – a point of exercising ever day, regardless of his work schedule. He switched to a ketogenic diet. He turned the corner, but, as he put it, “all the focus was on me.”

Carrie had avoided the home office and her real estate textbook since that phone call two months prior. She sat down and cracked the book open again. That night, she had a nightmare that Jason had died where she had seen him in the grass by the tennis courts. She had, from time to time in the past, dealt with creeping depression and anxiety, so she recognized the symptoms. This time, they crashed in on a battering ram of post-traumatic stress. She started EMDR psychotherapy; when Olivia stopped sleeping through the night for the first time since she was four months old, Carrie found her a psychologist, too. It helped them both.

“It’s a rollercoaster,” she said. “I think therapy is a good idea for the ICU patient and the family.”

Jason had the same advice. “Seek therapy for all involved, whether husband, wife or children.”

Fourteen months later, Jason has recovered completely. It took nearly that long to get so far.

“I never thought we’d be looking at a whole year,” Carrie said. “Be patient and have faith.”

When Jason drives by MCR on the highway, he sees it as a warm place, which, given what he went through there, “is weird,” he said. He goes back every once in a while to say hi. He’s friends with Janet Nelson and other nurses on Facebook. He’s looking forward to sharing his story with fellow ICU survivors and family. Carrie wants to help, too.

“I think it’s great this support group is happening,” she said. “What happened changed our lives forever.”

The ICU Survivor and Family Support Group at UCHealth Medical Center of the Rockies launches Jan. 17, 2018 and is planned for the third Wednesday of the month going forward.  For more information, visit UCHealth’s Classes & Events page.