Person of the Month-July 2018
The EPIC Foundation would like to recognize Tami Ambrose as Person of the Month for July, 2018. She has the goal of educating as many people as possible about Cushing’s disease, a rare life threatening illness that little is known about socially and a disease that almost took her life! Tami has a very unique story, being a patient who has no adrenal glands to treat Cushing’s, although she is a pituitary patient. This put Tami in the position of having Adrenal Insufficiency for the rest of her life. Tami has to deal with her chronic illness one day at a time. She is a phenomenal woman because she uses this opportunity to impact the lives of others as well.
Tami feels that she has been increasing awareness by “working at the top”. She sets out to educate the medical field which can be daunting. She says,
“It is very scary the ignorance of Cushing’s disease in the medical field. I have had a handful of doctors that tell me that they don’t learn much about Cushing’s in medical school only because they tell them you will probably never meet a Cushing’s patient”.
Tami has also encountered doctors who have turned her away or didn’t seem to want to know the truth. Tami always has been proactive. She asks all the necessary questions, does extensive research, calls professors and teachers at teaching hospitals, and speaks up when things are not right. Tami continues to advocate by guest speaking at her local community college nursing program and she plans to speak at other schools as well. Tami has affected change in many ways. One example is that she was told by a nurse practitioner in the next town over that she was able to start the diagnostic process for a patient who presented in the ER and had Cushing’s symptoms. The nurse practitioner said that she would never have picked up on the symptoms had she never met Tami.
Everyone should read about Tami’s compelling story:
Tami remembers getting her menstrual period at age 9. She had heavy bleeding, cramps, and bad PMS. She had her first child at age 32. She says that she didn’t really gain weight while pregnant with her first child and began having Vertigo. After the baby was born, Tami’s doctor decided to kill her thyroid and she began losing a lot of weight. Tami had her second child at age 35. She was a very busy mother with two young babies and “an absent husband and father to her children”. She virtually had no time for herself and stayed very thin.
Suddenly something changed by that following year. She started having difficulty sleeping and started putting on weight. Tami was not eating much but was feeling stressed because her husband was having an affair and she kept packing on weight. Tami also noticed that she became very energetic! She tried to solve her worry about the bills by taking on a side job of painting. She ran a hair salon but her painting business also grew very quickly. Tami would crash every night at 10 PM but would wake up every morning at 1 AM with endless energy. She would work on chores all night including cooking and cleaning. However, there were also times that Tami could not even get out of the bed, she was so sick. She recalls that there were 9 weeks when she would force herself to go to work but then would come home every day and sleep for hours. Then she would cycle back to having all of that energy from before. Tami’s appearance also changed and she developed a bigger stomach but skinnier arms and legs.
One day, Tami ran into a nurse friend who said, “Maybe you have Cushing’s Disease”. Tami did the research and felt that this was her answer. However, when she saw her family doctor, he laughed at her and said, “No my dear, you need to exercise more and eat less”. So, she attempted to exercise and diet but nothing worked. Tami continued to gain weight and noticed other symptoms such as mood swings, increasing energy, high blood pressure, chest pains, and clumsiness. Tami says that she didn’t like the other symptoms but she was “addicted to her highs” because of the amount of energy she had.
The turning point was on Christmas Eve, 2014. Tami had a couple of friends over to entertain. She didn’t eat or drink anything but her stomach was protruding and she felt very ill. Tami’s mother said that she should see her doctor at the same clinic she had been to before. So, Tami went to her mom’s doctor who also dismissed her. A nurse that worked there said, “You need to get the hell out of here, there is a new doctor in town!”
Tami went to a new physician named Dr. Daher, accompanied by her mother. The doctor knew right away by looking at her that something was wrong. He did the 24 hour urine free Cortisol test and it came back close to 9000 which was in a dangerous range. She was immediately ambulanced to the University of Iowa where she stayed for a few weeks and then she was sent to Mayo Clinic in Minnesota. It took over one month to get her blood pressure down enough to have surgery. The doctors opted to perform a Bilateral Adrenalectomy (BLA) where she had both of her adrenal glands removed in order to save her life from Cushing’s. The surgeon, who was a Cancer surgeon, told Tami that she was the sickest patient that he had every operated on. Tami was bedridden for months and had a terrible time weaning from the now lifesaving steroids. Tami still needs brain surgery. She has a 12mm macroadenoma that is ACTH producing with a current ACTH of 1250. The doctors have also looked for an ectopic tumor. Though Tami knows that she needs brain surgery, she wanted to feel good enough for her son who had kidney surgery this past winter. So, she has delayed the surgery. Having a pituitary tumor with no adrenal glands has caused symptoms of Nelson’s Disease including darkening of the skin.
Tami’s life has changed, drastically, due to her journey with Cushing’s. In her own words, “I have been discriminated against for my weight, color of my skin, and not being the reliable person I used to be. My life has changed. I feel all my 30’s and 40’s, I was someone I don’t even know. I have huge faith. Prayer is what gets me through. I have a wonderful church. After my BLA, the church raised $20,000 and to this day, someone is always checking up on me”.
Tami is passionate about bringing change into the world because she “does not want anyone to suffer unnecessarily” the way she did. She was fortunate enough to be introduced to Dr. Daher and Dr. William Young from Mayo Clinic who said to her, “my only job is to save your life!” Tami believes that she is meant to make a difference. Tami calls Dr. Daher her role model. He is a doctor who came to practice in a small town in Iowa and Tami was his 3rd patient there. She believes that “he is the smartest most caring person she knows”.
Learning to live without adrenal glands has been quite challenging. Tami has had to accept that she has a chronic illness and will deal with health problems for the rest of her life. Many people ask her, “shouldn’t you be better by now?!!!” Because of this, Tami believes that awareness is key. Educating others about how chronic illness impacts a person is vital. Tami plans to affect positive change in the world by increasing awareness.
The EPIC Foundation proudly honors Tami Ambrose! She is a person who has taken past adversity and has used it as an opportunity to walk in her purpose and change the world. Tami is determined to increase awareness of this life threatening illness that is underdiagnosed. Together, We are EPIC!