I’m Not Letting My Fear of Surgery Control My Life

Leah Leilani avatar

by Leah Leilani |

farewell, support system, tiredness, single, ableism, angels, independence, crip camp, redefining success, introversion

For several years, I’ve been feeling nauseated in the mornings after I eat breakfast. Whatever food item occupies my plate that morning — be it a chocolate chip muffin with a few strawberries or an apple with a side of yogurt — inevitably upsets my stomach. Fruits of any kind are out of the question, as well as any dairy products or sugary breakfast foods, such as pancakes or doughnuts. 

A few weeks ago, I mentioned my morning food sensitivity to my internist during my yearly appointment. She said my symptoms could be caused by stones in my gallbladder and ordered an abdominal ultrasound.

Given my physician’s confidence that I had gallstones, I didn’t expect to be given a clean bill of health. My symptoms had to be caused by some abnormality in my digestive system. 

My prediction was confirmed a couple of days after my scans. As I was taking my daily afternoon nap — a requirement for me to get through the day without falling into a relapse — my mom received the results from my doctor via phone. The scans revealed that my gallbladder contained six or more stones. Unfortunately, the medical world has not yet found a solution for gallstones besides surgically removing the entire organ, which means I will have to go under the knife. 

Interested in Muscular Dystrophy News research? Sign up for our forums and join the conversation!

In my case, surgery is not a matter to take lightly. I have what is called malignant hyperthermia (MH). MH is triggered by certain anesthetics that cause the body temperature to rise to dangerous levels. Unfortunately, this rare disease does not usually present itself until you are exposed to anesthesia. Very few anesthesiologists have had experience with it. Children of parents with this disorder are susceptible to it, as well. 

Rewind a few years to the time I had a surgical procedure to cauterize some lesions in my throat. My family and I had no knowledge that I had MH, nor did we know the risks of having the surgery performed at a surgicenter where there would be no emergency medical help. During this seemingly simple surgery, my parents sat in the waiting room. Suddenly, they were rushed into a small room and handed a Do Not Resuscitate document. My parents took this as a sign that I must be in dire straights. We can only assume this was because I was experiencing complications due to MH. 

I made it out of that surgery all right, but the emotional trauma to my parents and me still lingers, along with the knowledge that any future surgeries would be complicated by MH. 

As I anticipate the surgery to remove my gallbladder, I try to put on a brave face. As the voice in my head whispers what-ifs, I attempt to calm my nerves by putting my trust in God and the doctors who will take my case. As I binge-watch “Grey’s Anatomy,” I repeat my mantra that this scripted television show is not a depiction of real life in the operating room. 

I will not let fear take away the freedom to make my own decisions regarding my health. I refuse to let fear stop me from living a healthy and happy life. 


Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.


Leave a comment

Fill in the required fields to post. Your email address will not be published.