“You’re special,” my doctor reminds me for the umpteenth time after I ask permission to travel abroad, start a new sport, or trying a different medication. “You’re not going to be able to do everything you want.”
I shrug and say, “I’m used to it.”
And that is the truth. I have come to terms with the complications, lifestyle and barriers my congenital heart defect has handed to me. At a few days old, I was diagnosed with tricuspid atresia, ventricular septal defect, and coarctation of the aorta, which would all require numerous palliative open-heart surgeries. Though I was not old enough to remember the traumatic ordeal of open-heart surgery, the experience lingers within me, reminding me of its presence with unexplainable aches, shortness of breath and dizziness.
My adolescence greeted me with a lot of growing pains. I began experiencing chronic chest pain which I became accustomed too rather quickly. There was nothing I could do to change it, so I had to live with it and take pain medication when needed. What really knocked me off guard was the increasing discomfort I felt about my assigned-female body.
My self-identity was in turmoil as I tried on multiple different labels, desperate to find anything that fit. I even contemplated that maybe my heart defect was the cause of the detachment I had with my body. However, no explanation satisfied the void until I discovered I was transgender.
There was an unknown comfort I felt whenever someone accidentally called me “sir” or “him.” I would tell my friends it didn’t bother me, but the truth is it made me ecstatic. I began wearing a chest binder to achieve a more masculine look. But because I was already short of breath from my condition, I had to wear a size up, which never gave me a completely flat chest, making my dysphoria to worsen. I tried my best with what I was given though and dreamed about the body I would have once I started medically transitioning.
What frightened me the most about being transgender was the medical procedures I would have to undergo to feel at peace with myself finally. Though medically transitioning is not for everyone, it was something that I was very interested in, despite my pre-existing complications.
“I can give you a referral to an endocrinologist,” my doctor said after I expressed the desire to start testosterone. “But I can’t guarantee they will want to work with you, due to your issues.”
I felt my dreams shrink in a second. Never before had been so consciously aware of the real barriers my defect would have on my life. Anxiety enveloped me days leading up to my hormone consultation — then anger. I felt cheated out of fulfillment.
To me, it was unfair that I had this congenital heart defect given to me. I knew for sure that I could not live my promised 40 to 60 years in the body that I detested; and if I was unable to change it, I had no idea what I’d do.
Up until this point, I had been so passive about my condition. Psychical restrictions never frightened me. I have traveled to exotic and breathtaking places, earned a black belt in karate, and I am still relatively active and fit, despite my condition. I allowed the perception of invincibility to fit snuggly in my mind. Now, it was finally at question, and I was not prepared for it.
“We’ll just need approval from your cardiologist,” my endocrinologist chimed with a smile, “and then we can get started!”
“Wait, really?” I asked with disbelief.
My dreams began to grow again, and I felt the weight of my insecurities fall off of my back. I nearly started crying on the exam table because I just felt so lucky. I imagined everything else is easy from here on out.
As it does for everyone, testosterone had some gnarly side effects for me. This included anxiety, restlessness, acne, and headaches. However, none of these have been the result of my heart condition reacting poorly to the hormone replacement therapy, which I felt blessed about. I only take a small dosage of testosterone a week and am under close watch to make sure everything is getting along.
As of now, I have been on testosterone for a little over two years, and had top-surgery (double mastectomy and chest masculinization) done just two weeks ago! I feel very blessed to have a fantastic team working with me to achieve the needs of my transition and my heart defect. However, it isn’t going to be easy as I age.
Over the last two years, I have been diagnosed with liver fibrosis, a newly discovered and worsening side effect to the life-saving heart surgery I received when I was just 3 years old. A sensitive digestive system and fatigue accompany the fibrosis, which has caused other problems in my life. New issues will keep showing up as I get older, and could complicate my transition. Ideally, I want to be on testosterone for the rest of my life, but my condition may decide otherwise.
I have no idea what the future will look like for me. There are so many variables and complications because of my heart defect. I may need a heart transplant; I may not. Some of my organs might fail, or they won’t. Nothing is certain because congenital heart defects like tricuspid atresia are only starting to be understood.
The best I can do for now is live the life I want. Just as always, I will not let fear paralyze me from living the way I would like to.
The most important lesson I’ve learned from this is that there is always a way to get what I need. I will never settle for anything less.