By Katie Kerwin McCrimmon
Trapped inside her body, unable to speak or move anything but her eyelids, Denise Capelli nonetheless could hear her hospital caregivers.
Most assumed she was in an irreversible vegetative state that she wouldn’t survive. They thought she couldn’t understand what was happening to her. In fact, Denise became a witness to her own care. As she lay helpless in her hospital bed, she heard one nurse cruelly blame her for her illness. Other nurses and doctors forged a path for her to heal through extraordinary kindness.
The young florist and her husband never had been in a hospital before except to deliver flowers.
Then, at age 37, after suffering extreme stress and turning to alcohol, Denise’s sodium levels plummeted and she spent five weeks in the Intensive Care Unit of a Denver hospital, battling for her life. She suffered liver and brain damage and became stuck in an extremely rare “locked-in” state. Her brain could not communicate with her muscles. She could not breathe, swallow or move on her own.
Doctors told John Capelli, then 44, that his wife’s chances of survival were just 4 percent. They advised him to prepare for her death.
But as the weeks progressed and Denise eventually moved out of the ICU, John became convinced that she was trying to communicate through her tears and by blinking.
“I saw something in her eyes. I knew she was in there. We just didn’t know what state she was in,” he said.
As John struggled to keep their floral and wedding business afloat, he fought for any possible treatments and demanded that family and caregivers bring hopeful attitudes with them to Saint Joseph Hospital. Family members filled the room with photos of the couple and their dogs, posters of beach scenes and colorful window decorations that would turn shafts of evening light into sunsets inside the room.
Despite terrible odds and lousy treatment options, John believed doctors could “unlock” Denise from her paralysis and bring her back to life.
It turned out that he was right.
The couple emerged from their medical trauma with transformed lives and a new passion to serve as patient advocates. Denise rebounded and was able to describe her experiences like few patients who have been critically ill ever can. She and John now are part of a growing movement in health care: patient and family-centered care.
‘Working ourselves to death’
John and Denise Capelli met in 1999 at her sister’s wedding. She designed the flowers. And he was a commercial and wedding photographer there to document the occasion.
Afterwards, John called Denise to discuss the idea of giving each other referrals. He also wanted a personal partnership too. The couple married in 2001 and joined their businesses a year later as Capelli Floral and Photography.
In the years that followed, the floral business exploded and John phased out of photography. With the economy humming, he and Denise could hardly keep up with all the orders. Outside of work, life wasn’t easy. John and Denise took in a nephew for five years while the boy’s father was behind bars. They also became entangled in a lawsuit that dragged on for two years. Under pressure, they had to move their business and ultimately sell their house. Denise also cared regularly for her ailing grandmother.
“Things in life were coming at us and smacking us,” John said.
At the same time, Denise had risen to the pinnacle of her profession, one of only 13 florists in Colorado to be accredited by the prestigious American Institute of Floral Design. She took on leadership roles in the industry, and she and John booked wedding after wedding, many of them far away in the mountains. When the economy began to nosedive in 2008, so too did solid business clients that had supplemented their wedding business.
“We were working ourselves to death trying to keep the business afloat,” John recalled.
As the stress mounted, Denise began drinking more and more heavily. She hadn’t had an alcohol problem in the past, but it escalated in the three years prior to her hospitalization. John suggested marriage counseling and encouraged Denise to join Alcoholics Anonymous, which she did.
“We love each other. There’s no doubt there. But all of this was putting a lot of stress on our lives,” John said.
“It was a perfect storm,” said Denise. “I was self-medicating. My body couldn’t take it anymore.”
By the summer of 2012, the couple was in crisis.
“She was losing a lot of weight and going nonstop,” John said. “During this period, she was drinking. We were trying to address it, but she was struggling.”
At the end of June, doctors did some blood work and gave Denise medication to try to improve her appetite. By August, Denise’s eyes were turning an ominous yellow, but she and John assumed the discoloration was a side effect of the medication. In fact, her liver was beginning to fail.
On September 7, John insisted on taking Denise to the doctor again. She felt like she had the flu and didn’t seem well. Her doctor immediately sent her across the street to the Emergency Department at St. Joe’s where tests showed her sodium levels were dangerously low.
“She should have been in a coma or dead. Normal sodium in a person is 135. Critical is dropping down 10 points. Denise’s was below 100,” John recalled.
“I was coherent that first day in the ICU,” Denise recalled. “The first thing out of my mouth was, ‘I did this to myself with my drinking.’ And a tear rolled from my eye.”
Denise would soon begin to slip away.
Locked inside her body
She entered St. Joe’s on a Friday. John assumed she’d be out by Saturday, Monday at the very latest.
They had a wedding client that weekend in Steamboat Springs. John enlisted one of Denise’s friends to help him design the flowers. He drove the eight hours roundtrip worrying about Denise, but finding refuge in the fall beauty.
Patient and family-centered care
2012 — Massachusetts required all hospitals to create patient advisory boards
Across the country — from small practices to large hospitals, leaders are working to become “Patient-centered Medical Homes,” and are adding patient advisers.
Trend today — eliminating visiting hours. Better Together campaign from the Institute for Patient and Family-Centered Care aims to get 1,000 hospitals to allow families to visit loved ones any time. John Capelli faced no restrictions on visitation when his wife was at Saint Joseph Hospital in Denver and credits family support with helping inspire a dramatic recovery.
Patients educating doctors: John and Denise Capelli recently spoke to doctors and policy makers at the Patient-Centered Primary Care Collaborative’s 2014 Western Regional Conference in Denver.
Little did he know how precipitously Denise’s health would decline or that she would end up in the hospital for three months.
Within a week, doctors diagnosed her with CPM, Central Pontine Myelinolysis. A type of trauma to the brain stem, CPM typically prevents a patient’s brain from communicating with the organs. Denise had to be put on a ventilator and doctors induced a coma. Days later, a lung collapsed and Denise needed a blood transfusion. A cascade of medical complications was making Denise sicker by the moment. First the low sodium levels triggered CPM. Then the severity of the CPM led to a rare and little-understood condition called “Locked-in Syndrome” that is more commonly associated with stroke victims.
Denise was essentially locked inside her body. Without life support, she might have died.
“Doctors learn about it in medical school, but they never see it,” Denise said.
Every day during Denise’s medical crisis, John took orders for flowers while keeping a vigil at his wife’s bedside. He found the ever-changing staff of residents at the teaching hospital bewildering and the neurologist’s bleak pronouncements that Denise would never recover shocking and unacceptable.
“Most people die. There isn’t a treatment,” John recalled them telling him.
Denise can’t remember anything from her five weeks in the ICU, but she vividly remembers her care in the weeks following when doctors moved her to a recovery ward even though they remained pessimistic about how much she would improve. One of the worst moments came when two nurses were working on her. They talked about how nice John was and commented on how cute the couple had been when Denise was well.
“Well, don’t become an alcoholic,” one of the nurses snapped.
The comment stung. Denise heard and understood the nurses’ entire conversation, but she could not speak. While the nurse’s judgment angered Denise, she also knew the woman was telling the truth in part. Denise’s alcoholism had played a role in her illness. Guilt about that would haunt her for months.
For John, the palliative care team that specializes in end-of-life care and pain management proved to be most helpful.
“We decided to start taking her off life support and let her body react,” John said. “It was a balancing act that we went through.”
Always slim and only 5 feet tall, Denise had wilted to 55 pounds.
Remarkably, as doctors began to wean Denise off the ventilator, her body showed some signs of resiliency. The neurologists were still pessimistic. They predicted Denise would never regain her ability to eat and forever would be dependent on caregivers.
“The neurologist said, ‘This is it. This is where she’s going to be for the rest of her life.’ He basically wrote her off,” John said.
That attitude infuriated John at the time, but in retrospect, he can see how poor the prognosis looked.
“He was basing his opinion on the information he had. She had a 1 percent chance to unlock and recover. As far as we know, she’s one of five in the world to do this,” John said.
“At the same time, as a family, we weren’t just going to write her off at that time. We were going to give her time to recover.”
John urged doctors to try anything that might work.
“I changed my tune. This is a learning hospital. If we have a 1 percent chance, then that’s what we need to focus on. When my wife was coming out of ICU, her mental status was getting clearer and clearer. There were signs of hope and resiliency. Everybody needs to get on board.
“We’re past the textbook part of this. Now we think outside the box. They went above and beyond and really stepped up,” John said.
The human side of doctors
A key turning point in Denise’s recovery came in late October. She began moving her right index finger and her nurses responded giddily, like she had just stood up and walked out of the room.
Unclear yet on all that had happened to her, Denise didn’t understand why her simple movement was a big deal. Nonetheless, she kept doing it.
“I spent a lot of time talking to myself. So when the nurses would roll me over, I would try to reach for the bedrail. First, I went for movement with the right hand, then the leg.”
Perhaps it was possible that her body was unlocking.
Denise kept willing herself to move: first her right finger, then her right hand, then the full arm. She eventually could move her right toe and her caregivers rigged a pad that she could press with her foot to call nurses if she needed help. It was the first time in weeks that she could communicate with anything but her eyes.
Denise’s progress sparked a turnaround in her care, from an attitude of judgment and hopelessness by some to one of excitement.
A woman was then the chief resident came up with the unconventional idea of reading to Denise and several residents took turns doing so.
Dr. D.J. Dutton was among them and often stopped by early in the morning before rounds.
“We didn’t know how much she was getting,” Dutton said, but he kept it up. “I read to her almost every day. I’d just read one or two if the passages in the book.”
Dutton said Denise’s MRIs gave his team very little hope that she had much brain activity left.
“When you see that much damage in that area of the brain, you get pretty discouraged,” he said.
But as time passed, Dutton started to see little improvements and felt like he was beginning to communicate with his patient.
“If you put yourself in a resident’s shoes, when you walk into the ICU, a good portion of your patients are on ventilators and are sedated. You don’t know what their level of understanding or communication is,” Dutton said.
“One of the things I learned form this situation was you can never make an assumption based on labs or imaging.”
Denise very distinctly remembers Dutton and the others reading to her.
“It was incredibly helpful, beyond what I could ever express to see that human side of doctors. Rather than wanting to listen to me breathe, to take five or 10 minutes to sit down and read to me was amazing.”
When John heard about the reading, he couldn’t believe it.
“They don’t do that,” he remembered thinking. “I thought she was hallucinating.”
Braced for life as quadriplegic
Altogether, Denise spent 87 days in the hospital, 37 of them in the ICU.
She never suffered from pneumonia or bedsores, common ailments for patients who are hospitalized for that long.
“They really took amazing care of me,” Denise recalled.
Remarkably, by early November, doctors stopped using the term “locked in,” and started to focus on Denise’s future. Devastated by her illness and the sudden hospitalization, Denise was overcome with grief and caregivers determined that her long ICU stay had left her with Post Traumatic Stress Disorder.
John had suffered traumas of his own. But the patient and the caregiver had coped with entirely different challenges.
Denise wrestled with her guilt, the lost time, the permanent damage she might have suffered. She dealt with both physical and emotional challenges.
John had to juggle medical dilemmas with the demands of their business. Friends in the floral community rushed in to help. John brought beautiful floral arrangements to brides, then raced back to the hospital to be with his wife.
One day, a nurse thanked him for being there. John was stunned by the comment. Of course he would be there, he thought to himself. But the nurse said that in circumstances like those that he and Denise had suffered, it’s common for partners and spouses to give up and disappear. Some find the pain and uncertainty too overwhelming.
John still wonders why some family members stay and others leave. The Capellis had not had a perfect relationship before their crisis. Nonetheless, John never doubted that he would fight for his wife.
By mid-November, Denise’s physical state was fragile, but much improved. Once certain that she would be a quadriplegic for the rest of her life, doctors determined that she could move her right side. They doubted she would ever reactivate her left side.
One week after Thanksgiving, John and Denise received a gift few thought possible. On Nov. 29, Denise left the hospital. She was in a wheelchair, but she had survived her ordeal.
‘A miracle that science can’t explain’
Recovery was slow, but the couple was determined. Like a baby, Denise had to learn everything again from speaking to walking. Her physical therapist, John and Denise’s dad challenged her with all sorts of exercises to bring back movement. They worked in the pool at their apartment complex as well, and by the end of January, Denise was able to leave her wheelchair behind and get around with a walker.
Once again, the neurologists had been wrong. Denise, John and all her caregivers managed to reawaken her left side.
“It was like my right side. Slowly over the course of weeks, I could wiggle my finger, then my hand. I had the attitude that, ‘I’ve come this far. If the feeling comes back, great. If not, I’ll learn how to accept it.’”
Months after her hospitalization, Denise remembers running into Dr. Dutton.
“I moved my left hand and his look of amazement was incredible. They were all pretty shocked that I got any movement. When I got full movement, they were dumbfounded.”
Dutton has kept in touch with Denise and John. He still can’t match up her progress with the brain scans that provided so little hope.
“It’s amazing. I may never see something like this again,” he said. “Even neurologist might never get to see a patient recover and have a meaningful life like this.”
Dunning once summed up Denise’s case this way: “You are a miracle that science can’t explain.”
By March, Denise had graduated from a walker to a cane and took her first trip to California. Last June, she achieved a lifelong dream and she and her dad took a trip to France. When she returned home, she gave up the cane for good.
As Denise recovered, she discovered that all of her goals had shifted. She still loved flowers, but neither she nor John wanted the stress of handling weddings, so they stopped doing them. They simplified their lives, cut their living expenses, took on fewer clients and began to dream of different professional possibilities.
“This whole situation was my wakeup call,” Denise said.
She abruptly overcame her alcohol addiction. Prior to her hospitalization, she had tried to stop drinking, but had been unable to make lasting headway. Afterwards, everything had changed.
“I have no desire to drink. I realized I needed healthier things in my life,” Denise said. “Five weeks of my life were gone. It was an easy decision to make.”
She gave up smoking cigarettes as well and she and John found a new calling as patient advocates.
Promoting patient-centered care
Denise and John’s primary care clinic, the Bruner Family Medicine Center, is an outpatient clinic staffed by the young doctors who are training at the Saint Joseph’s Family Medicine Residency. Located just a block from the hospital, the clinic and the doctors there served as a lifeline for Denise.
Walt Schreibman, a psychologist and director of the behavioral science for the residency program, came up with the idea of creating a patient advisory board at the Bruner clinic. He wanted patients to weigh in on how they could get better care. And the clinic and residency program were considering becoming certified as a formal “patient-centered medical home.”
“We needed to get patient input on how we were doing. The best way to do that is to ask patients,” Schreibman said.
While the concept of asking customers for feedback sounds pretty basic for consumer friendly retailers like Nordstrom or Apple, the idea of seeking extensive patient input is relatively novel in health care.
Schreibman had gotten to know Denise and John during their ordeal in the hospital. He also had witnessed the struggles of residents who became invested in Denise’s care and at times, felt despondent over their inability to help her.
“They were thinking, ‘This is a young woman and we might lose her,’” Schreibman said. “The residents and the faculty are really invested in their patients. Dealing with any situation like this can be very stressful.
“I frequently am involved when patients face life and death difficulties. Sometimes the doctors end up feeling helpless, and while they’re doing everything they can, they end up worrying a great deal.”
In Denise’s case, her recovery was a huge relief to everyone involved. When Schreibman decided to start the patient advisory board, he wanted the Capellis as inaugural members.
The board that includes nine patients launched last fall. At monthly meetings, clinic managers, doctors, residents, medical assistants and office staff all attend.
“It’s been very helpful,” said Schreibman. “We have the patients there and also the clinic staff so that decisions can be made right then and there. We’ve all been part of groups where you hash over things and nothing gets done because it has to go to somebody else. We’ve been avoiding that. We wanted to make sure the decision makers were part of the board.
“It has energized the patients because things get done.”
Some of the changes have been relatively simple.
For example, another patient on the board noticed that people in wheelchairs had nowhere to sit in the waiting room. Many were stranded in the hall. There were plenty of seats in the waiting room, but there didn’t seem to be any place that a caregiver and a patient in a wheelchair could sit side by side.
“The only place for them to stop and wait was right in the line of traffic,” John said.
The patient advisory board and clinic managers quickly carved out spots in the waiting room for people in wheelchairs.
“It’s been a blessing having them,” Schreibman said of the Capellis and the other patient advisors.
‘Don’t be afraid to speak up’
Experts in patient-centered care say that more and more clinics and hospitals around the country are learning to tap the wisdom of patients.
Massachusetts now requires patient advisory boards for all hospitals and around the country, patient-centered providers from large hospitals to small doctors’ offices are following suit.
“The gurus are learning from patients and families,” said Bev Johnson, president and CEO of the Institute for Patient and Family-Centered Care in Bethesda, Md.
Johnson recently came to Colorado and appeared on a panel at a conference with the Capellis. She first met them about six months ago when she came to Saint Joseph’s to give advice on how to put patients and families at the center of care.
“Denise and John bring so much positive energy,” Johnson said. “Here they have this horrific story. It’s quite awful to be so sick and vulnerable and have people blaming you for your illness.
“Yet they have this generosity and spirit to decide, ‘Not only am I going to get over that. I will help make the system even better,’” Johnson said.
Patients bring fresh eyes to health systems, Johnson said.
For example, during a “walk-through” at Bruner, patients noticed that the greeter at the front door was great, but that the actual clinic entrance was unwelcoming. Managers are working on improving that and also are producing videos and brochures. John is eager to help with one for caregivers to ensure they have the support they need when loved ones face a medical crisis.
John and Denise also helped with a brochure that explains to patients and families how residency programs work. Initially during Denise’s hospitalization, John had not understood why so many doctors rotated in and out of both the ICU and the recovery ward.
New people kept walking in and introducing themselves as Denise’s doctor.
Someone finally explained the system to John.
“They called me and said, ‘We heard that you are getting a little frustrated with all the different doctors every day,’” John recalled.
Once he understood the role that each person was playing, John felt much more comfortable having a team to support Denise and him. And, once Denise began to show signs of recovery, the young residents got especially excited about researching an array of possible treatments for her. They were the most willing and eager to propose unconventional options.
In general, John said the communication between health care providers and patients can leave patients and caregivers feeling isolated and confused.
“I’d never been in a hospital situation. It was completely new. It wasn’t that the doctors weren’t communicating. But they were using a different language,” John recalled.
He learned to ask frequent questions and to aggressively advocate for his wife.
“I don’t quite understand what this means,” he would tell the doctors. “Put out a roadmap for me.”
John received critical advice that he now frequently shares with others who have loved ones in the hospital.
“Don’t’ be afraid to speak up.”
Overall John felt Denise got excellent care, but one time, he had to stop a nurse from giving her some medication incorrectly.
The nurse was trying to give Denise a spray by mouth. John believed she was supposed to receive it through her tracheotomy.
The nurse thought he was correct. But John insisted that the man go get a supervisor. In fact, John was correct. The mistake probably would not have harmed Denise, but hospital managers took the error seriously and gave John an opportunity to pursue a formal complaint. He was satisfied instead that supervisors were using the mistake as a teaching opportunity.
New peaks to summit
Remarkably, Denise now has recovered almost completely.
“I don’t have any disabilities, any handicaps. I’ve had to make a huge emotional recovery too,” she said.
Occasionally, some small physical triggers remind her of her ordeal. She doesn’t like too many covers or too much close body contact because she can feel trapped. Her brain still has little hiccups. For instance, a floor drain at the floral warehouse bothered her like a cattle guard stops cows. Crossing it made Denise feel unsafe.
Overall, however, she’s turned her near-death experience into an awakening.
“I don’t know why we’ve ended up taking this journey, but I’ve decided I’m going to learn from it. I’m very open,” Denise said.
She has written a book about her experiences and is sharing it now with agents.
She and John emerged with a stronger marriage.
“It brought us closer together and we reevaluated our priorities,” Denise said. “I got a second chance. I really am going to change my life.”
Denise worked for more than a year with her physical therapist and since “graduating,” has been working three times a week with a personal trainer. Their goal for her: to climb a Colorado14-er.
This Sunday, Denise, John and a team of friends, family and supporters including Dr. Dutton will be climbing Mount Bierstadt.
The ascent will mark a huge accomplishment for a patient once told she would never move anything but her eyelids again.
The Capellis next summit will be a dramatic professional challenge.
John and Denise have applied to become Peace Corps volunteers. They expect to be placed within the next year. Denise is hoping for Africa; John would love South America.
Both in the Peace Corps and as patient advocates, John and Denise hope to inspire people who have endured unexpected hardships. And they’re thrilled to tackle a new adventure.
Said Denise: “You always hear it, but now I really understand that you really only live once.”