Cushing's at 16
My name is Robin Bachkosky and at the young age of 16, I was diagnosed with Cushings Disease. My time from onset of symptoms to diagnosis was only four months but they were agonizing. I'm going to do my best to describe this experience, but every day had so much detail that this would turn in to a novel.
I started to notice that things weren't right around November 2013 because my face was red and I was gaining a lot of weight. The strange part about that was the fact that I was swimming and working out every day and dieting because I had noticed weight gain. Around December, I decided to start running a couple times a week because I noticed my face was getting a little bigger, which to me just meant I was getting fat and swimming wasn't helping. At the young age of 15, I didn't think to tell anyone about these problems because they were embarrassing, so I kept to myself until around March 2014 when I had noticed that my period had been absent for about 5 months. After that, my mom and I were in this together. We spent countless hours at doctors for the next couple of months.
Emotionally, it was hard. I was a teenager in high school undergoing huge hormonal changes and it was a lot to handle. I started to become really depressed and cut myself off from my friends because I was ashamed of the way I looked and felt. At this point, around April-May 2014, I had little to no contact with people outside of school unless they were doctors or my swim team.
I remember a distinct day, my 16th birthday on April 27th, where instead of being thrilled for my sweet 16, I cried on my kitchen floor because I couldn't wear short sleeves. I had an ugly rash on my arms, stomach, chest, shoulders, and face which was the severe acne. My face and stomach were also really bloated and all of my joints ached. I felt like I was turning 60, not 16.
After visiting with my primary care doctor (multiple times), dermatologist, OBGYN, and even an ER nurse, we kept hearing the name Cushing's. We tested for Lyme’s disease, diabetes, strep, and countless other common diseases before we even began to suspect a disease so rare. My primary care doctor didn't even think about Cushing's and just told me all of my symptoms were separate issues. The process was agonizing but once my 24-hour urine test came back, my cortisol levels were through the roof and that was my ticket into the hospital.
Around June 2014, I finally visited the hospital for the first time. Little did I know that my whole summer was going to consist of hospital visits. I went to Johns Hopkins Medical Center in Baltimore, Maryland and received excellent care! My first appointment was with the children's endocrinologist because I had just turned 16 and I was not considered an adult. This appointment is where I first learned that surgery was the solution to this disease. I didn't know what Cushing's was, I just knew that I had it, not that I had a possible tumor causing the disease. After this visit, I was sent to take more blood tests and came back and forth from my vacation to visit with doctors and finally discover that I, in fact, had a tumor on my pituitary gland.
I have to stop for a second and take a moment to thank my mom for everything she's done. She was so patient with me as my tolerance for people became lower and lower and my anxiety and depression skyrocketed. She pushed every single doctor to do the best they could do in diagnosing me and curing me as quickly as possible. Normal diagnosis for Cushing's disease takes years and she got this done in 4 months. I have such an incredible mother.
Once they got an MRI of the tumor in mid-June, the surgery date got scheduled for July 25th (even though my mom called and emailed my surgeon’s assistant every day to see if there was an opening because I was miserable).
Every day after July 25th, 2014 until now has been the road to recovery. I got back in the water swimming about 4 months after surgery and have been working on my endurance ever since. My depression and anxiety have been significantly better and more controllable which has allowed me to be around my friends, take pictures, go out with my family and increase my confidence and happiness again, which has really assisted in my recovery as a whole. I missed out on a lot more school than I wanted to but my grades did not suffer and I maintained all A's and one B all year. My success after surgery really is due to all of the people out there who have supported me through this all. I am so lucky to be as healthy as I am right now.
There is so much to my story that I did not get to mention. But every single action that everyone made gave me hope that I would get through this and the strength to do it. I am so grateful to be where I am today and I owe it all to my friends, family, my surgeon, my doctors, and most importantly, my incredible parents.
Cushing's definitely made me the person I am today and even though the experience was terrible, I am proud of who I am now!
Right now I am a senior at Severna Park High School and am interning at a physical therapy office. In the future I’m planning to major in biology and get my Ph.D to eventually become a physical therapist. My entire life has been consumed with doctor’s appointments and I think helping people recover from injuries is really needed in our world, plus it's interesting!
Photos: The picture of me in the hospital is the day of surgery and the picture paired with it is one year after surgery.
The picture in the blue and pink dress was about a month before surgery and the one paired with it (the red dress) is 11 months post-surgery!