Friday, March 27, 2009

Rare Care for a Rare Disease

Ellen is a member of the Cushing's Help Message Boards

From http://www.mywheaton.org/locations/elmbrook_memorial/EM_HG_surg_Ptstory1.asp

Cushing’s Disease is a rare condition where a non-cancerous tumor in the pituitary gland causes the production of excess cortisol, a stress hormone. This can lead to diabetes, obesity, high blood pressure, heart disease, suppression of the immune system, and much more.

“It basically ages you prematurely, affecting every system in the body” says Ellen, who, until recently, was suffering with Cushing’s Disease.

A resident of Colorado, Ellen went to her doctor complaining of many new symptoms, including fatigue and headaches. He suspected she might have Cushing’s Disease. He referred her to an endocrinologist in California for further testing.

The endocrinologist determined that Ellen’s condition would require surgery, removal of the tumor in her pituitary gland. Following the surgery, however, Ellen’s Cushing’s Disease persisted. Two options remained: another pituitary surgery, or a more definitive treatment, removal of her adrenal glands, the glands that sit atop each kidney and, in Ellen’s case, were producing the excess cortisol that was making her sick.

Ellen chose to remove her adrenals. Her endocrinologist immediately recommended the best doctor he knew of for the procedure: Dr. Manfred Chiang at Wheaton Franciscan Healthcare – Elmbrook Memorial.

Somewhat surprised that she was being referred to a hospital she’d never heard of in a small Wisconsin town, Ellen did some research. She discovered an online support group at www.cushings-help.com . She also learned that her endocrinologist was not steering her wrong.

“Dr. Chiang has a following,” explains Ellen. “Folks from all around the country had gone to him for their surgeries.” She decided to do the same.

When she met Dr. Chiang, she knew she had made the right choice. “He was wonderful; incredibly skilled and intelligent,” says Ellen. “He actively listened to me, followed through, and was exceptionally kind and compassionate.”

Her surgery went very well. Dr. Chiang performed the procedure laproscopically meaning it was minimally invasive. “There are very few hospitals in the country who regularly perform this unusual surgery,” says Ellen. “But fortunately, Dr. Chiang is considered one of the best bilateral adrenalectomy specialists in the nation.”

“I was up and about that same day,” says Ellen. “And I was finally free of Cushing’s!”

An excellent staff at Elmbrook Memorial enhanced Ellen’s experience.

“The entire experience was the most amazing I’ve ever had at a hospital,” Ellen says. “It was immaculately clean. I loved the warm colors, the layout, and the view. And the nurses were excellent; very intelligent, very willing and able to help. If I had an issue they figured out how to fix it and they fixed it. Every one of them introduced themselves to me, wrote their name on the board when they came into my room, and listened to me. That can be such a rare thing in a busy hospital. They really worked to make my hospital experience a good one.”

Ellen says at www.cushings-help.com she’s not the only one who feels this way. “I’ve never heard a negative word about Elmbrook Memorial.”