This is me y’all. In all my glory. I’m scarred from the belly up. I have been conquering this thing called Marfan syndrome since birth.
At the age of 25, I’ve been under more times than I would like to count.
Growing up, Dr. Fyfe always monitored my heart and the growth of my aorta. In July 2012, I was 17 and the doctor said it was time. That’s when I had my first open heart surgery.
This was the start of my senior year of high school and it was rough. I couldn’t wear a backpack, couldn’t lift more than 10 lbs. in each hand, and couldn’t sleep on my chest. And I can’t forget about the nightmares. Like anything else, time heals all wounds. 😌
November 29, 2018, was a day that changed my whole perspective on life. I had been feeling a pain in my chest. I ignored this pain for two days, and on the third day I checked myself into the ER.
I walked in that emergency room and had the quickest MRI ever! The doctor walked into my room and asked me, “How do you feel about surgery?” I already knew at that point I had no choice.
I had the biggest surgery of my life the next morning. A Triple-A (Abdominal Aorta Aneurysm) correction surgery. Maaaaaan, that surgery nearly took me out, but one thing I took away is this: tell your family, tell your friends, tell your DOG what you’re going through. They are there to help.
The doctor said if I would have waited one more day, I would’ve died. By the grace of God I am still here.
Surgery number three was around this time last year. The cardiologist told me that I needed to get an ICD (implantable cardioverter defibrillator). This was my first time hearing about this device and its functions. I was real hesitant at first; thought on it for like a week. Then I said maybe, just maybe, if my father had this he would still be alive.
When I came to that realization, I decided to get the device implanted. I’m still not happy about it to this day. Another scar, another surgery, a whole other process. This is life though; you have to roll with the punches and count your blessings.
My last and hopefully final heart surgery was in January of 2020. I went for my yearly CT scan thinking that everything would go smoothly. Apparently not. I got a call two weeks later telling me that I should prepare for another surgery. Another one!
I had swelling of the aorta in the lower abdomen. Basically an AAA, just in the lower abdomen. I had to go a whole five months thinking today might be the day “something bad” could happen.
Now, physically, I feel great. I’m exercising again, putting back on some weight, and just doing a lot more.
Mentally, not so much. This last surgery really took a toll on me. I don’t know how long I’m going to feel like this. I’ve discovered that physical recovery is a whole different thing from mental recovery. I just pray every morning to be put in a good place and I go on with my day.
Since sharing my story, so many people have reached out to offer me support and words of encouragement. Thank you to everyone for your kind words. Thank you for the motivation to keep pushing through every obstacle that I have encountered and may encounter in the future.
I will continue to share my experiences and spread awareness of this condition that nearly 1 in 5,000 people are effected by. We are in this together.
Elijah Williams (@publicenemy1_), from Dallas, had his first Marfan-related heart surgery at age 17. Eight years later, has been through four Marfan-related heart surgeries.