Andrea says that keeping a positive attitude is the key to dealing with chronic illness
Growing up, Andrea Maechtle was hardly ever sick. She never went to the doctor when she got a cold. She didn’t even stay home from school, or call in to work. She went about her day as if she weren’t sick at all.
But then came a nasty cold. She was in her 40s. The cold lingered for weeks. She broke her personal rule and went to see a doctor.
She was prescribed antibiotics at a local urgent care center. She took her medicine as prescribed and got plenty of rest. But when her prescription ran out and her symptoms continued, she found herself right back at the clinic.
She took another round of antibiotics. Nothing changed.
The doctor at the clinic suggested she see a pulmonologist… who tested her and diagnosed her with Alpha-1.
“It was like taking my car and running it into a tree,” Maechtle says.
“He told me I had this genetic disease that there was no cure for and I only had five years to live without treatment. Then he left the room.”
When he returned, he explained the treatment options to her, telling her that she would have to wait six months to start her Prolastin treatment. First, she needed to get her hepatitis shot. So that’s what she did.
In 1998, very little was known about Alpha-1. Maechtle remembers finding only one website that had a paragraph worth of information on her condition. She was able to start her Prolastin treatment in February of 1999 and was later connected with an AlphaNet coordinator named Liz Veronda, who was, Maechtle says, “sent-from-heaven perfect.” She felt much more comfortable knowing there was someone available to answer her questions.
Maechtle was living in Chicago and working 12-14-hour days as an inventory and asset manager in the food service industry when she was diagnosed. But her health slowly deteriorated. The stress of her work, her health and being a single mother to her son began to drain her.
Her infusion nurse suggested that she see a psychologist to help deal with the emotional strain, and Maechtle decided to do just that. She decided that she wanted to find a psychologist who knew a lot about chronic illnesses, ideally someone who had been diagnosed with one.
She found Susan Sholtes, a family therapist with Crohn’s disease. Sholtes specializes in teaching coping methods to help her patients overcome their illness. She uses her own experience as a motivational tool. One day, she began taping her patient’s stories. She found that replaying the tapes to her patients brought out not only physical dimensions of their disease, but the emotional aspect as well.
It proved life altering for many. They watched themselves on tape, then decided to make changes that would help them improve their health and the quality of their lives.
“It made me stronger to solve my own problems,” says Maechtle. “Then I decided to share my story with her other patients. From there, Caring Voices was formed.”
Caring Voices is an organization that brings people with chronic illnesses together to share their stories and offer emotional support to others. They provide support group meetings twice a month for people with chronic illnesses and promote a form of mind-body exercise called Neuro-Integrative Action or NIA. Their interactive website is filled with links to sources of information on complementary healing, support, advocacy and education.
The videos taped during each individual’s session had such a personal impact, the group decided to bundle them into one documentary to share and inspire others with chronic health conditions. First the group tried to produce the film independently, then The Art Institute of Chicago took over. It’s About Living revolves around the lives of five people with different chronic illnesses, including Multiple Sclerosis, Ataxia, a brain tumor, and Maechtle with Alpha-1.
In 2003, Maechtle went on disability. After being in and out of the hospital repeatedly, she was ready for a change. She moved to Statesboro, GA to be closer to her best friend in 2005. She now plans to start a support group in the area and currently has been talking to other Alphas that her doctor puts her in touch with. Eventually, she plans to take this idea further and begin lecturing on her own as a patient advocate. Her goal is to reach out to people with chronic illnesses and make them feel they are not alone.
Since a severe illness last February, she needs supplemental oxygen. Her two-hour portable supply limits where she can go and for how long she can stay out. She says she can go a long time without the oxygen, but, “It’s the anxiety of not having it with me that makes my breathing worse. I begin to panic and then I can’t breathe.”
By eating better and exercising, she hopes to be less reliant on her oxygen. While she had to give up her favorite hobbies like softball and volleyball, she still likes to swim in her pool.
Maechtle believes she’s learned the key to dealing with chronic illness: “Don’t let the illness determine what you’re going to do. Learn your limitations, but live your life. People will want to be around you if you have a positive attitude.”