{"id":14108,"date":"2018-01-10T10:35:29","date_gmt":"2018-01-10T17:35:29","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=14108"},"modified":"2023-06-23T10:58:23","modified_gmt":"2023-06-23T16:58:23","slug":"survivors-story-highlights-need-for-new-icu-support-group","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/survivors-story-highlights-need-for-new-icu-support-group\/","title":{"rendered":"Survivor\u2019s story highlights need for new ICU support group"},"content":{"rendered":"
<\/div>
\"Portrait
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\u0092 new monthly ICU Survivor and Family Support Group.<\/figcaption><\/figure>\n

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\u2019t 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.<\/p>\n

He expected to be hurting, but not hurting like this. Maybe it was the altitude.<\/p>\n

\u201cI need to sit down,\u201d he told his friend. \u201cI can\u2019t do this.\u201d<\/p>\n

Jason remembers none of what came next. His wife Carrie does \u2013 all too well.<\/p>\n

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.<\/p>\n

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\u2019s 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\u00a0\u201cwidow maker\u201d and very nearly lived up to its name, Jason\u00a0was home again with wife and child.<\/p>\n

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 \u201cand they lived happily ever after.\u201d<\/p>\n

It wasn\u2019t that way. It\u2019s never that way. And that\u2019s why, starting January 17, MCR is launching Colorado\u2019s first ICU Survivor and Family Support Group<\/a>.<\/p>\n

One and two<\/strong><\/h3>\n

There\u2019s more to Jason and Carrie Levi\u2019s story, and we\u2019ll get to that. But first, we need to introduce one medical term and two nurses.<\/p>\n

\"Portrait
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.<\/figcaption><\/figure>\n

The medical term is post-intensive care syndrome (PICS). The nurses are Jenelle Baer and Janet Nelson. They\u2019re 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.<\/p>\n

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\u00a0will end up with some form of PICS. One-third will exhibit Alzheimer\u2019s-like cognitive effects; the same percentage will struggle with impairments akin to those of traumatic brain injury survivors.\u00a0 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 \u2013 muscle weakness that can persist for a year after leaving the ICU \u2013 lingers with a third of patients on ventilators and up to half of those who stay in the ICU for a week or longer.<\/p>\n

PICS radiates beyond the patient. Seventy-five percent of family members have anxiety and 42 percent have PTS symptoms.<\/p>\n

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.<\/p>\n

\u201cA lot of patients don\u2019t remember much of their time in the ICU,\u201d Baer said. \u201cThey fill in the gaps with things that can be scary.\u201d 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.<\/p>\n

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\u2019s 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.<\/p>\n

\u201cWhat we\u2019re 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\u2019re not alone,\u201d Baer said.<\/p>\n

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.<\/p>\n

\u2018A war\u2019<\/strong><\/h3>\n

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<\/a>) to help his body heal. That lasted for three days. Given the diminished blood flow to Jason\u2019s brain from the heart attack, no one knew whether he had suffered neurological damage. The odds were that he had.<\/p>\n

\u201cWe didn\u2019t know if he was brain dead and they\u2019d have to pull the plug,\u201d Carrie said.<\/p>\n

 <\/p>\n

She did her makeup and hair that morning and drove over to the hospital, where she\u2019d been spending long days.<\/p>\n

\u201cI had no idea what a war the ICU can be,\u201d Carrie said. \u201cIt\u2019s such a dark, scary, lonely valley of life.\u201d<\/p>\n

Jason tracked people\u2019s 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<\/a>. All the time, he was coughing. He had contracted pneumonia while on the ventilator. As the day progressed, it became clear that he wasn\u2019t 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\u2019s brother Brian Potesta, a Chicago-area firefighter and paramedic, was there that night and as a\u00a0family member and advocate.<\/p>\n

\u201cIt was a gnarly whirlwind of a night,\u201d he wrote.<\/p>\n

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.<\/p>\n

\u201cI wanted to address the situation head-on,\u201d 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.\u201d<\/p>\n

This aligned perfectly with the husband Carrie Levi knew: pragmatic, unemotional, a fighter, \u201cjust a rock,\u201d she said. It would take time to regain that strength.<\/p>\n

A short, important visitor<\/strong><\/h3>\n

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 \u2013 ICUs can be scary for little ones \u2013 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.<\/p>\n

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\u2019t lift his own toddler.<\/p>\n

Back home, he was \u201ca shell of himself,\u201d as he put it. \u201cObviously 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.\u201d<\/p>\n

Carrie described those weeks as \u201cthe darkest and most terrifying of my life.\u201d Jason rarely spoke. When he moved at all, he dragged himself around. He didn\u2019t drive, didn\u2019t handle the finance and other household tasks he had otherwise breezed through, didn\u2019t have the wherewithal to take pills unless she put them and a glass of water in front of him. \u201cIt can be like taking care of a baby,\u201d she said.<\/p>\n

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.<\/p>\n

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\u2019t 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.<\/p>\n

\u201cNot to have to worry about dinner for a month was so huge,\u201d Carrie said. \u201cJason is the cook. We would have eaten hot dogs for a month.\u201d<\/p>\n

With help from various therapy and rehabilitation efforts, Jason focused on recovery. He made \u2013 and still makes \u2013 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, \u201call the focus was on me.\u201d<\/p>\n

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<\/a>; 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.<\/p>\n

\u201cIt\u2019s a rollercoaster,\u201d she said. \u201cI think therapy is a good idea for the ICU patient and the family.\u201d<\/p>\n

Jason had the same advice. \u201cSeek therapy for all involved, whether husband, wife or children.\u201d<\/p>\n

Fourteen months later, Jason has recovered completely. It took nearly that long to get so far.<\/p>\n

\u201cI never thought we\u2019d be looking at a whole year,\u201d Carrie said. \u201cBe patient and have faith.\u201d<\/p>\n

When Jason drives by MCR on the highway, he sees it as a warm place, which, given what he went through there, \u201cis weird,\u201d he said. He goes back every once in a while to say hi. He\u2019s friends with Janet Nelson and other nurses on Facebook. He\u2019s looking forward to sharing his story with fellow ICU survivors and family. Carrie wants to help, too.<\/p>\n

\u201cI think it\u2019s great this support group is happening,\u201d she said. \u201cWhat happened changed our lives forever.\u201d<\/p>\n

The <\/em>ICU Survivor and Family Support Group<\/em><\/a> at UCHealth Medical Center of the Rockies launches Jan. 17, 2018 and is planned for the third Wednesday of the month going forward. \u00a0For more information, visit UCHealth\u2019s <\/em>Classes & Events<\/em><\/a> page.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

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\u2019t played tennis since moving to Colorado a year before. […]<\/p>\n","protected":false},"author":23,"featured_media":14111,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[6],"tags":[113,3479,274,267,9187,1789],"class_list":["post-14108","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-healthy-living","tag-behavioral-health","tag-counseling-services","tag-emergency-medicine","tag-intensive-care-unit","tag-readysetco","tag-uchealth-medical-center-of-the-rockies"],"acf":[],"yoast_head":"\nSurvivor\u2019s story highlights need for new ICU support group | UCHealth<\/title>\n<meta name=\"description\" content=\"Spending any time in an ICU, whether you're a patient or a family member, may result in a condition called PICS - Post-Intensive Care Syndrome. 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