Battling For Breath

Jill Armentrout
THE SAGINAW NEWS

Since surviving a devastating lung condition that kills almost half its victims, Dee Storey of Saginaw Township doesn't take a single breath for granted.

Storey spent a month in Saint Mary's hospital starting in April 2000, her breathing supported by ventilator. Much of the time she was in a drug-induced coma, as her body rode the "roller coaster" of Acute Respiratory Distress Syndrome.

It would take more than a year of oxygen therapy, rehabilitation and support from new friends to get her life back. She has created a quilt for a national Acute Respiratory Distress Syndrome Foundation to honor survivors.

Most people have never heard of the disease, but about 150,000 people are diagnosed each year in the United States. Doctors can save more patients than they did when the problem was first described in the 1960's but there is no specific treatment or cure.

People who have the syndrome learn the microscopic alveoli or air sacs in the lungs are inflamed and can't function. The sacs collapse and fill with fluid, so the lungs can't work to exchange oxygen and carbon dioxide with the blood. As the lungs try to heal the damage, scar tissue forms and creates more problems.

The syndrome progresses very quickly and can start from a wide variety of causes-from lung trauma to pneumonia.

"Firefighters get this from smoke inhalation, so do premature babies," Storey said. "People don't know about it because so few of us survive."

At 49, the Saginaw Valley State University education professor had no reason to suspect she was facing a serious lung condition.

A month before, she'd had surgery to insert tubes in her ears to correct a hearing problem. Trauma that leads to Acute Respiratory Distress Syndrome generally happens within 48 hours of onset, however. "The cause behind her case remains a mystery," she said.

"Other people just have a backache or feel like the have the flu," she said.
Storey had headaches and flu symptoms, but dismissed them as she worked to complete the school year. She was at home alone when she started passing out.

"I woke up on the floor, by the back door. I was so tired. I didn't call 911 until the next day, and that was because my cat was so upset."

She has no memory of her trip to the emergency room and admittance to the hospital.

Voices and people drifted in and out, she said. Soon, she was breathing with help from the ventilator. Her brother, Richard, came to the hospital from Detroit, along with other friends and siblings.

"I think this harder for family than it is for the patient," she said. "I was on medication and not aware of much. They know how bad it is."

Her brother, who eventually had to go back to his job, kept up with doctors long-distance as Storey's condition improved and then worsened day by day.

When she finally was well enough to leave the hospital, Storey took home oxygen tanks and 50 feet of tubing. Her long recovery was really just beginning.

In rehab, patients learn energy-saving techniques

She needed home care, but her siblings couldn't take time away from work. Finally, her pet sitter, an education student, stayed with her until a friend moved in.

"When the doctor told me I'd need a least a year to get better, I couldn't fathom it. I counted the days on the calendar."

Rehabilitation that started in the hospital continued with physical, occupational and speech therapists coming to her house. A month in the hospital and lowered oxygen levels left her incredibly weak and affected her short-term memory. She walked with a cane.

"At first, just sitting up in bed was challenge. It took an hour to take a shower, to make soup.

"But therapists just don't hear the "I cant.' You can whine, they smile, and you do the exercise anyway."

Storey started eight weeks of pulmonary rehabilitation in January 2001 at Covenant Medical Center-Mackinaw. There, patients build strength by walking on treadmills and riding bicycles while being monitored by nurses and exercise specialists. She also joined the Better Breathers Society support group for people with chronic lung problems and started reaching out to the Acute Respiratory Distress Syndrome community on the Internet. She often sends e-mail to family members of other patients.

But the path to getting her real life back was taking her first solo steps outside her door. She wasn't ready to go back to work until January, so quilting became an outlet.

"I had to get out of the house, but it wasn't easy," Storey said. "What if I fell? What if the oxygen blew up? But a man in the support group told us he goes hunting with his tank. If he could do it, I could. I found a class at a fabric store with a flyer so I could prove I'd gone."That positive attitude and encouragement has helped Storey get through a lot, she said. She continues to meet with the Better Breathers almost very week.

"We learn to find 10 good things in a bad situation and it works. I'm much more thankful now. My life came to a screeching halt with this and I missed a lot. Now it's a different life, but not bad."

"The society is for people with all kinds of chronic lung problems and their families," said Martha Newman, respiratory therapist at Covenant, who leads the group. Most have more common problems, such as asthma and emphysema.

"We don't focus on what we can't do but what we can," she said. "They are great support for each other."

In rehab, patients learn energy saving techniques, how to walk stairs, bend over and go out on a windy day-things that most people take for granted, Newman said.

The center square of the quilt features photos of Andrea Landry of Virginia and her son, Thomas, who was delivered last year while his mother was in a coma fighting Acute Respiratory Distress Syndrome. She is just one survivor named in the quilt.

Today at 52, Storey's lungs function almost completely normal and she doesn't use supplemental oxygen, but scar tissue in her trachea blocks part of her airway. Her vocal cords also were damaged by the ventilator.

"I still sound like Darth Vader," she said. "I use a microphone for class lectures."

The stigma of carrying around a tank is gone, but Storey takes her time walking across campus.

"Sometime when I park in the handicapped spots, people come up and tell me to move," she said. "I just tell them this isn't a club anyone wants to join and walk away."

Jill Armentrout is Neighbors section coordinator at The Saginaw News. You can reach her at 776-9681.

Research continues on Acute Respiratory Distress Syndrome
THE SAGINAW NEWS

Doctors have identified more than 60 different causes of Acute Respiratory Distress Syndrome. The most common are pneumonia, sepsis (an overwhelming infection of the body), aspiration of fumes, food or stomach contents into the lung, and trauma. These conditions cause the body to manufacture substances that may cause inflammation in the lungs.

The warning signs vary because the syndrome is brought on by so many different things. Shortness of breath, coughing and fatigue are most common. Other conditions, such as severe pneumonia and congestive heart failure sometimes are confused with syndrome.

Researchers are continuing to explore this medical problem, which was first described in 1967. Mortality rates were about 80 percent at that time and have dropped as low as 40 percent today, according to the national Acute Respiratory Distress Syndrome Foundation.

Complications of the syndrome can include infection or trauma to the lungs from a ventilator. The underlying problems that brought on the syndrome can lead to damage of other organs due to lack of adequate oxygen.

There is no specific treatment, but patients generally must stay in the intensive care unit on a ventilator and are sedated to keep them calm and comfortable.
For more information, contact the Acute Respiratory Distress Syndrome Foundation by calling (312) 749-7047 or vist the Web site at www.ardsusa.org.
The Better Breathers Society meets 2p.m. to 3:30p.m. Tuesdays at Covenant Medical Center-Mackinaw, Mackinaw at Tittabawassee. A social worker and respiratory therapist facilitate the group. For information, call 583-4302.