The story of Lisa
HypoGal, My Story
Most of my life I have never considered what the words, “chronically ill” meant. I had related the words,” chronically ill” to someone dying or being paralyzed. I naively had taken for granite the ability to walk, talk, socialize, use the restroom or drive a car. I had no idea that after the arrival of my second daughter, Isabella, my life would take on these new words, chronically ill.
Hi, my name is Lisa and I have Sheehan’s Syndrome. I hope my story will help other women who are ill and in search of answers. This is how my life with a chronic illness begins… I gave birth to my oldest daughter, Sarah, via C-section on January 24, 1996. I was a first time mother but I knew the delivery was not normal. During my delivery I had screamed at my hospital nurse that the contractions felt as if my inside organs were being pulled out of my body. The nurse and the nursing staff discredited my screams and my OB was on vacation for the weekend. My timing definitely was not good. As my daughter’s heart beat began to decrease the doctor decided an emergency C-section needed to be performed. The surgeon discovered during my C-section that I had partial placenta accreta. The placenta accerta meant my daughter’s umbilical cord was imbedded inside of me. The surgeons discovered placenta accerta had caused me to hemorrhage. Fortunately, the surgeons were able to stop the bleeding and my uterus was saved.
After several miscarriages I was able to become pregnant with my second daughter, Isabella. This time a planned C-section and a delivery date were chosen, March 15, 2002. As soon as my OB delivered my daughter, I knew something was terribly wrong. After Isabella’s delivery I relentlessly threw up, my body temperature was abnormally low, I was so fatigued but I was not able to sleep. I was not aware that all these symptoms were mostly like an adrenal crisis.
A week later I arrived home with my beautiful baby daughter but never felt normal. However, I questioned, what was my normal? I had just been through five years of difficult pregnancy’s. I had never been ill before and thought I must be tired, like all new moms. As the months passed so did my weight. At first I was happy but then I could not stop the weight lose. My food intake went rapidly through my system. And, the fatigue. My entire body painfully throbbed as if I had just finished a full marathon. Each week I became weaker and weaker. I was depressed, I had very limited short-term memory, trouble with my speech, I fell down from dizziness, my body ached all over and I had extreme jabbing abdominal pain. I dreaded conveying all my symptoms because it sounded like I was a hypochondriac.
Oh, my poor family had to live through my emotional havoc. Everything and anything would make me cry and the thought of everyday life just overwhelmed me. I felt so ill and so weak. Each day I would cry and cry in pain like a wounded animal but I did not know what was wrong with my body. My husband did what he could to be supportive but at numerous times I am sure he thought I had serve postpartum depression and that I was a hypochondriac.
Through my seemingly never-ending appointments with different ologists, I conveyed to doctors that all of these symptoms began with the delivery of my second daughter. Yet, doctor after doctor, specialist after specialist that told me that I was fine. Each doctor conveyed to me that my labs were normal, I had marvelous low blood pressure of 60/90 and I was just exhausted because I was a new mother. Numerous doctors told me that I had postpartum depression. Frustrated, I explained to the doctors that I was depressed because I was ill, not because I depressed. It was extremely obvious by December, 2002 that I was seriously ill. I was extremely thin but not healthy thin. I was malnourished anorexic thin, pasty white, too weak to lift my new daughter and too dizzy to walk. At this time, I really did not care if I died. I just wanted to find out what was wrong with me. I felt utterly, hopeless.
Desperate for answers my husband placed calls to friends that might know a brilliant doctor. A friend referred me to Dr. Larry Froch at UCLA and it was Dr. Larry Froch that first suspected that I might have Sheehan’s Syndrome. The results of stimulation test given by Dr. Froch confirmed that I might have adrenal insufficiency. Dr. Froch referred me to the Head of Endocrinology at UCLA, Dr. Van Herle. Dr. Van Herle questioned the diagnosis the likelihood of Sheehan’s Syndrome but once he received the results from his ordered diagnostic test, the Metyrapone test, it was confirmed. I finally knew what disease I had, Sheehan’s Syndrome.
Sheehan’s Syndrome is a rare disease and the treatment is an endless balancing act of medication. My pituitary gland does not signal hormones to produce, so I need to take replacement medication throughout the day. I can best relate the pituitary to an automobile ignition switch. My body, like a car has all the working parts but a non functioning ignition (pituitary gland) switch. The pituitary gland similar to the ignition of an automobile sends out messages for the body to operate. I am fortunate there is medication to help replace the hormones that my body doesn’t produce. However, medication is never quite the same as what your body would produce naturally. My body does not act well to stress of any kind. Events such as an illness, physical or emotional stress can send my body into an adrenal crisis.
I am also extremely fortunate to live in a time where I have access to information, i.e. The Internet. Without the Internet, I would never have connected to an incredible group of Sheehan’s Syndrome women. This online group has given me so much knowledge, compassion and a place to emotionally connect. It is within this group that I was able to find an Endocrinologist whom specializes in the pituitary gland. Many Endocrinologist only specialize in Diabetes and a limited amount of Endocrinologist have few if any pituitary patients. Most doctors and endocrinologist have never had a Sheehan’s Syndrome patient. There are older medical books that state Sheehan Syndrome patients can live a, “normal life” with medication. However, I have never heard of or meet a person with Sheehan’s Syndrome that lives a normal life with medication.
Finally, I have a diagnosis, Sheehan’s Syndrome. However, my health dominos continue to fall. As the year moves forward I continue to become shorter and shorter of breath. Anxious and very concerned about my lack of air, I made an appointment with a Pulmonologist, Dr. Schiffman. Dr. Schiffman told me I needed to use my asthma inhalers and that I may have some bronchial issues down the road. Per, Dr. Schiffman’s instructions I begin to use my asthma inhalers numberous times a day. But, each passing day my ability to breath decreases. Each breath I took felt like I was grasping for air through an extremely narrow straw; I was not able to get air. Alarmed, my husband took me to our local Emergency Room. My pulmonologist was at the ER and he informed my husband that my lung X-ray was normal. He then proceeded to walk my husband into the hallway to tell him that I was depressed and I had anxiety.
After Dr. Schiffman informed to my husband I was depressed and I had anxiety , Dr. Schiffman told me I needed anxiety medication, I needed to leave the Emergency Room and to go home. I then proceeded to have an emotional breakdown in the Emergency Room and I refused to leave the E.R. Angrily, I told Dr. Schiffman that if he spend me home, I would die. Finally, after pleads from my husband, Dr. Schiffman relented and ordered a VQ Scan of my lungs. As soon as Dr. Schiffman reviewed the VQ Scan he admitted me into Critical Intensive Care. The VQ Scan showed that my lungs were filled with hundreds of small embolisms. One embolism can kill you. So, for the rest of my life I need to include blood thinners on my daily medication list.
A year goes by and it is now March 2004. I am still experience extreme abdominal pains, especially on my lower left side. I had seen a Gastro Internal Doctor, Dr. Trenbeath in 2003 and I was told by Dr. Trenbeath that I was just depressed and stressed from being a new mom. I had insisted on testing. Dr. Trenbeath performed a colonoscopy, endoscopy and told me my test results were normal. One day in March, 2004 and I felt an extreme sharp chest pain. It was the type of sharp chest pain that drops you to the floor and cannot be ignored. Sadly, I believed I had another embolism.
I arrived at the Emergency Room and a gambit of test were run. A CT scan showed that I had air in my abdominal cavity so I ended up on the operating table for emergency exploratory surgery. I awoke in a hospital room with my abdomen split open and a colostomy bag on my right side. My colon had perforated due to serve Diverticulitis. The surgeon was upset and he told my husband and I that my colon should not have perforated. The surgeon could not believe I had a colonoscopy a year prior.
My eight itch incision from exploratory surgery had to be left open and to heal naturally. It takes two months for my abdomen wound to heal. My body heals from the surgery but my emotions do not heal well. After two months I am able to have the reversal surgery and I have the colostomy bag removed. My youngest daughter had just turned two. I felt blessed to be alive but robbed of my daughter’s first years.
My life with Sheehan’s Syndrome continues. As the years pass I am better able to balance my medication. Life on steroids is a challenge and I struggle as my weight goes up and down. My immune system is compromised and my tendency to have unexplained illness has become a way of life. I am taxed and frustrated from my terrible bouts of Shingles, Fibromyalgia and Chronic Fatigue Syndrome. I definitely have a new insight into our medical and insurance system. I have learned a great deal from numerous caring people. The world is filled with so many intelligent people who are truly tying their best to improve society. These are some lessons I have learned from my medical journey:
Never to outsmart your common sense
Medicine is subjective
An individual can be serious ill and yet have completely normal labs.
Life with an invisible disease can be extremely difficult. If you were to look at me, you would assume that I am healthy. What most people do not realize is that it can take me each hours each morning to start my day and each day can be unpredictable. My windows for being productive are often short and sporadic. Unless you have a chronic illness it can be difficult to understand.
Who am I now? Some people have told me that I have learned so much from my medical experiences and I must be thankful to have had this medical odyssey. I always answer no; I want my old life back. I feel that I have spent too much of my life surviving and not enough living. I miss not been able to go at a moment’s notice, being able to go for long walks, spend the day in the sun and to have shop to you drop days with my girls. But, as the saying goes, “when life gives you lemons you learn to make lemonade.”
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