Woman fights blood vessel disease with rehab
When Gayle Schwarz was diagnosed with a rare disease that attacks the body's blood vessels, she knew her life would change. It started with her hands.
Schwarz couldn't figure out what was creating a rash on her knuckles. It took two years and a variety of medical tests to diagnose her with dermatomyositis (DM), a rare autoimmune disease that is caused by autoantibodies.
According to the American Autoimmune Related Diseases Association (AARDA), autoantibodies are proteins created by the immune system to fight bacteria and infections. "However, sometimes the immune system goes into overdrive and creates proteins (autoantibodies) that target one's own body tissues, a process which defines autoimmunity. Autoimmunity is a disease category which is the cause of (more than 100) autoimmune diseases, such as type 1 diabetes, Crohn's disease, Sjögren's syndrome, celiac, and lupus," according to AARDA.
The AARDA reports "approximately 50 million Americans, 20 percent of the population, suffer from autoimmune diseases and women are more likely than men to be affected. ... Some estimates say that 75 percent of those affected -- some 37.5 million people -- are women."
For some unknown reason, there is a trigger that causes the immune system to attack the body. As for Schwarz, the attack was on the small blood vessels surrounding her muscles. "Inflammatory cells surround the person's blood vessels, eventually leading to degeneration of their muscle fibers. A number of person's with the disease present detectable levels of autoimmune antibodies in their bloodstream," says the website Disabled-World.com
Research shows that when muscles do not get the proper blood flow, the muscles will atrophy and easily fatigue. "At work, I started to notice that I couldn't just get up and walk without getting very short of breath and becoming tired," said Schwarz. The rash on her hands was painful.
She also had dangerous recurring fluid build-up in her heart and lungs and resorted to heart surgery.
"Basically the doctors cut a hole in my heart in order to drain the fluid," said Schwarz. The procedure was called pericardiocentesis -- also known as a pericardial tap. During the procedure, a needle and catheter are used to remove fluid from the sac around the heart. Her fluid was tested to rule out congestive heart failure, signs of a heart attack or an infection in her heart.
"My signs and symptoms were a mystery to my entire list of general physician's," said Schwarz. "So, they eventually referred me to a rheumatologist." After several tests, including a muscle biopsy, she was diagnosed with DM.
Schwarz relayed her story in terms of a gradual withdrawal of her quality of life.
Shortly after her diagnosis, Schwarz retired from her job as an IT office manager for a small trade association in southeast Michigan. She also had to give up many of her hobbies of knitting, quilting and gardening. It was especially difficult for her to give up her "bells." Schwarz was a member of her church bell choir and loved to provide music to her congregation.
"But things started to change with therapy," she said. Her local pulmonologist, Manish Kapadia, MD, referred Schwarz to Port Charlotte Rehabilitation Center.
For the past few years, Schwarz and her husband, Ernie, have spent winters in the local area to get away from Michigan's cold temperatures. This year, he said, after they got back from Florida, she was hospitalized for two months fighting her lung disease. He said she was very weak and wants her in cardiac and pulmonary rehab as soon as they get back to Florida.
"When I first started therapy (Port Charlotte Rehab Center) I could barely stand or walk," said Schwarz. She was able to make progress on a new, state-of-the-art treadmill at the facility, known as the AlterG. It's an anti-gravity treadmill that uses air pressure to reduce body weight. Patients are encircled into a chamber that can decrease up to 80 percent of body weight.
Schwarz said she initially started her therapy with 50 percent of her body weight mechanically reduced and only the ability to walk for 5 minutes. She can now walk for 20 minutes on the treadmill at an increased speed.
"I know that the biggest boost for me was my confidence," said Schwarz. "Three times a week I was surrounded by a team of therapists who all gave me such positive affirmations." Schwarz now envisions a future of potted-gardening and taking photos of her favorite outdoor scenes. "Of course, my quality of life has improved. Now if I can just stay out of the hospital, she said.
After her two months rehab and hospital care, Schwarz went on a one-week camping trip last month, and she said she'll go on another one.
Meanwhile, the Port Charlotte Rehab team is celebrating Schwarz's success.
For more information, contact Port Charlotte Rehabilitation Center at 941-629-7466. The facility is located at 25325 Rampart Blvd., Port Charlotte.