Tuesday, January 17, 2017

My friend Tami finally found help for Cushing's

Daily Freeman Journal
A benefit is planned for Sunday at Trinity Lutheran Church to help offset medical expenses for a Webster City woman who is battling a rare condition.
About seven years ago, Tami Ambrose started to noticed that something just wasn't right. Her body started changing and multiple doctors were unable to pinpoint what was wrong. She started gaining weight despite living a busy life, working two jobs, raising two young sons and being very physically active. She had a hard time reconciling those symptoms with the fact that she always felt full of energy.
"Doctors told me I needed to eat better and exercise more to lose the weight," she said.
But in December 2014, she felt like something growing in her abdomen.
"I could literally feel something and it kept getting bigger and bigger," she said. She later learned that sensation was actually a nonmalignant mass. Again she found no answers from the medical community.
A friend suggested that she contact Dr. Reda Daher at the Van Diest Medical Center Clinic. She credits him with finding out what the answer to what she was experiencing – untreated Cushings Disease.
"He knew by looking at me right away what I had," she said. Ambrose said Daher tested her for the disease and confirmed the diagnosis. Ambrose said she believes that had he not found that diagnosis, her condition would have likely been fatal.
According to a National Institute of Health website, Cushing Disease is a condition in which the pituitary gland releases too much adrenocorticotropic hormone. Too much ACTH causes the adrenal glands to make too much cortisol. Cortisol is normally released during stressful situations, those "fight or flight" moments.
Symptoms of the Cushing's Disease include weight gain, high blood pressure, high cholesterol, high blood sugar, muscle weakness, backaches, skin changes and moon face – where the face becomes rounder and may look flushed, according to the website.
"My cortisol levels were so high," she said. "In a normal person, the level should be 5. My cortisol level was 16,000."
Ambrose said those extreme levels caused her blood pressure to skyrocket. She was sent to the University of Iowa Hospitals in Iowa City and also had some consultation with doctors from the Mayo Clinic.
The physicians found a tumor on her pituitary gland in her brain.
"Normally, (removing the tumor) is all they have to do to stop this," she said.
"People are usually diagnosed quickly and then receive treatment. But since mine was untreated for so long, my condition went way too far," said Ambrose.
Once her blood pressure and cortisol levels were low enough, Ambrose underwent a nine-hour surgery in Iowa City in April to remove her adrenal glands. In August, she'll undergo the surgery to address the pituitary gland tumor. The nonmalignant mass in the area between her stomach and lungs will also need to be removed.
The extremely high cortisol levels made her case very rare. So rare, in fact, that endocrinologists from around the U.S. and even internationally were interested in following her case and will be on hand for her upcoming surgery, she said.
"When I go back in August, a team endocrinologists from other countries are coming. They want to meet me," she said.
Ambrose said she feels better since her April surgery, but she's now on more medications than she's ever taken, including hormones. Ambrose also said her immune system has been destroyed, making her very susceptible to illnesses. That's something else she'll have to cope with for the rest of her life.
"When I asked the doctors when will I feel normal, they just say it's going to be a new normal," she said.
The busy single mom has been sidelined by the disease and unable to work. She and her mother have operated a beauty shop and she's also worked as a painter.
"I doubt I'll ever be able to paint again because my muscles have weakened," she said.
Her illness has been a big change for her two sons, 11 and 13, who were accustomed to seeing their mom always on the go.
She said her family, friends and members of Trinity Lutheran Church have stepped in to help her.
"They've all been very supportive," she said. "I'm grateful for them and for Dr. Daher and the staff at Van Diest Medical Center. They're just great."
The benefit on Sunday will be held from 11 a.m. to 1 p.m. and will feature a baked potato bar, salads, bars, coffee or lemonade. A freewill offering will be taken. A bake sale will also be held. Thrivent Hamilton County Chapter 31144 will match funds raised up to $3,000.