Cushing’s… My Strange Flight…

Sharing your own story and connecting with others who understand is a huge part of recovering from any trauma. This story is a tribute to patients and families who are suffering or who have suffered from the devastating effects of Cushing’s disease and to the incredible doctors, nurses, clinicians and researchers who continue to help us cope, manage and heal. My son, Alex, was diagnosed with Cushing’s in October 2014, at age 17. Much of the following is a paper Alex submitted as a writing assignment for a freshman English class in college. Our family was also deeply affected. This is our story.

Alex in the family lounge after pituitary surgery

After a restless night’s sleep, my alarm went off at 5:00 am on October 31, 2014. Little did I know that the memories of the next 7 days would change my life. We began our drive at 5:45 am, crossing the George Washington Bridge. After parking, I walked with my mom, dad, aunt and sister across the parking lot, 2 blocks north and entered Morgan Stanley New York Presbyterian Hospital. We checked in and took an elevator to the 4th floor; they were awaiting my arrival, to prep me for surgery. I was scheduled for a 7 am transsphenoidal adenomectomy, removal of a 1.6 cm tumor that had grown on my pituitary gland.

During the previous 4 months, I experienced a rapid succession of extreme symptoms including a 30-pound weight gain, high blood pressure, roundness in my face, pad of fat on the back of my neck (buffalo hump), bad acne that did not respond to medication, easy bruising, thinning of the hair on my head, excessive hair growth on my face and chest, kidney stones and stretch marks across my abdomen, upper arms, legs and back. After my pediatrician suggested these symptoms were not out of the ordinary and that I should start exercising and dieting, my Mom started searching online and determined that these were symptoms of a condition called Cushing’s and that I needed to see an endocrinologist. That was our path to Dr. Sopher at NY Presbyterian.

October 31, 2014 — I was given a gown to change into and a bag to hold my belongings. I was terrified, relieved and hopeful that this surgery would get me back to looking and feeling like my normal self. I met with my “dream team” of surgeons, doctors, nurses and technicians who would perform my 7-hour surgery. I was administered a dose of morphine to take the edge off, and a nurse came to get me. My mom, dad and sister walked down the hallway with us as far as they were allowed; we hugged and I continued on without them. I was terrified. The room was square in shape, the walls were painted white, and the lights were incredibly bright. It was really cold and it looked like there were boxes lined up against the wall on one side almost like a storage room, TV monitors lined the other side of the room. The nurse walked me to a skinny metal table in the middle of the room where I had to lie down. The icy chill of the table sent shivers down my spine. They fastened a foam harness around my head and secured my chest, arms and legs. Then, they pricked me full of IVs. Immediately I felt the sedative. The anesthesiologist told me to count backward from 10. Then… darkness…

I want to take you back to 2 weeks prior. I was sitting in Dr. Sopher’s office, my endocrinologist. She explained that the pituitary gland (master gland) produces critical hormones that help regulate most of my body’s functioning systems. The tumor was making my gland produce too much ACTH, which directed my adrenal glands to produce excessive amounts of cortisol. If left untreated, this would continue to wreak havoc on my physical and emotional health.

On October 12, 2016 we met with the most brilliant, most gentle and most compassionate man I have ever known, Dr. Richard Anderson, my neurosurgeon. A week prior, during my mom’s frantic search to find Cushing’s professionals, she sent a general email to Columbia Presbyterian Endocrinology Department. The day after her email, while we sat in the waiting area at St Joseph’s Hospital (Paterson, NJ) waiting to be treated for my kidney stones, my mom received a phone call from Dr. Anderson’s office. As it turned out, Dr. Anderson was not only the pediatric neurosurgeon at NY Presbyterian, but he was also the pediatric neurosurgeon at St. Joe’s, where I had just been admitted. Thus began a whirlwind of tests, MRI, procedures, exams and meetings that led to my Oct. 31 surgery.

During our initial visit, Dr. Anderson explained the seriousness of my condition simply and calmly, saying, “Alex, you are a rare bird my friend.” Time seemed to stand still.

October 31, 2014 — A bright light woke me up. I looked down and I noticed clear ribbed tubing dangling from my mouth. Then darkness set in once more. I remember waking to a sharp pain in my wrist. I looked over and saw 2 nurses working on an IV at the bottom of my wrist. I asked them what they were doing and one of them responded, “Stitching an arterial line.” Darkness.

I remember waking up once again with my family surrounding me; I was still dazed from the anesthesia. Did I tell you that I’ve always HATED NEEDLES! I soon realized that I had an IV in each hand, one in my left wrist, one in my left forearm and two in my right forearm, 6 altogether. I whispered to myself, “This is a living nightmare!”

The first two days flew by, mostly because of the painkillers. I had to lie at an angle so the area they had cut could heal. During my weeklong stay in the hospital, I learned so much about myself, my family and how fortunate I was.

I learned not to take the simple things for granted. While recovering, I learned that the tumor was very close to growing onto my optic nerve. I could have lost my vision and the ability to appreciate the beauty in this world. During my hospital stay, I found comfort in a family lounge where I could view the magnificent New York skyline. I found joy in the sunrise and sunset, and in simply connecting with my supportive family.

On November 4, 2014, I traded my dreadful gown for my favorite sweatpants and hoodie. I showered at home, and stepped out to a steamy reflection in the mirror. I wiped away the steam and realized, “The rare bird was back in his nest.”

My family was by my side the whole time and their love hastened my recovery. I was grateful for a successful surgery. During a year-long recovery, I experienced some minor complications: I was diagnosed with post-operative diabetes insipidus and was prescribed medications such as hydrocortisone, potassium chloride and desmopressin. Currently I have my blood regularly checked; I no longer take desmopressin and only need hydrocortisone during illness. I am expected to begin taking Human Growth Hormone this winter because my growth hormone levels are not returning to normal. I am grateful that I have only experienced minor residual effects from Cushing’s and my surgery.

I am forever grateful for the incredibly professional and compassionate care I received for all my medical experiences during those 4 months and my continued follow-up. It was a challenge to get my initial diagnosis; we dealt with a pediatrician, dermatologist, urologist, nephrologist, social worker, 2 endocrinologists, emergency room visits and a 4-day hospital stay. The important message that I want to convey is that in the end I was treated by the most superb medical staff and the kindest people. I am so lucky.

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State: New Jersey

Newsletter: Winter, 2016