“My whole world changed in an instant…”
On July 31, 2020, my whole world changed in an instant. I came back home from an early dinner. Suddenly my whole left arm went numb. I started sweating even though my house was cool. I could not feel my left arm. I called my sister and brother-in-law who work in the medical field as pharmacists, and they told me that I should go to the ER to be on the safe side.
In the ER, they did an EKG and blood work and said everything was fine at that moment. I was thinking that I was going to get discharged soon. Then they wanted to do a CT scan to make sure everything was good. I was in the waiting room when the nurse came out with this pale look on her face and said that you need to be taken for emergency heart surgery immediately since I may only have a few hours to live. I asked the nurse if she was looking at the right patient file since I am only 38 and there is no way that I could be going through something like this.
The nurse and their team began preparing me for surgery and to transport me to the main hospital where the cardiac team was waiting for me. At this moment, I started thinking wow this could be the endgame for me.
I went to the operating room where I met the surgeon and his team. I have had minor surgeries before and the teams were lighthearted and jovial. When I went in and met the surgeons team, you could feel the severity of the situation. The surgeon explained that I had a few hours and that the Type A Aortic Dissection surgery has a high success rate, however, there are no guarantees because of how close you are to the end of the line. I had a few moments to gather my thoughts and come to peace that this could be the end.
When you are so close to death like I was, the interesting thing is that time slows down and you are just focused on the present moment intently. I told the surgeon that it was a good thing that he has the wrong guy because I am not dying today because I am an Avenger (I am a big Marvel fan if you can’t tell lol). Unfortunately, I knew deep down that living or dying was not up to me.
The Type A aortic dissection surgery lasted 12 hours. They had to repair the thoracic part of the aorta and replaced my aortic valve with a mechanical valve. I lost 12 liters of blood during surgery. When surgery was completed, the surgeon asked if I had ever been diagnosed with Marfan Syndrome. My family said no and he said, “Well you should have him see a geneticist because his connective tissues and the cardiac event was textbook Marfan Syndrome.”
I was in an induced coma for 5 days.
I was in the hospital all by myself for a month because my family could not visit due to Covid-19. It was the most lonely feeling I had. I felt depressed because this was the toughest thing I have ever encountered and not having a support system around you during those moments was intense. I had round the clock treatment and everyday was a struggle to walk and talk. I couldn’t talk for 40 days because my vocal chords were paralyzed when they intubated me for surgery.
I finally left the hospital and it was a great feeling seeing my family again. The recovery began with home health coming in, taking my INR and helping with PT.
My cardiologist mentioned in my first telehealth meeting in late August 2020 that I may not be able to work until 2021. This was the time to recover and get back to normal routines again. I was on FMLA at my job and my boss mentioned to me that HR could not guarantee my job past October 2020. In addition, while I was on FMLA, I was not getting paid. When I heard this information, I was devastated, however, my competitive side began to come alive. I basically said that I will come back to work by October 2020. My dad and coaches always taught me to get back up when you get knocked down in life. I am glad this lesson was instilled in me because I needed a championship effort on my end to make the goal happen.
My physical therapist would come daily for an hour. The first day of PT was not great. I was not able to walk to the mailbox without being exhausted. The PT would say we can stop after 15 minutes if this is too much for you. I said to her “No, baby s***”. I can see Captain America saying to me “Language” lol. I could not allow the difficultness of this recovery to beat me. I said I needed to push forward regardless of how difficult this was. Each day I kept pushing my walks a little further. In addition, she gave me homework assignments on exercises I could do at home which I was doing relentlessly.
Then my in person meeting with my cardiologist took place on September 14, 2020. They ran the gamut of tests on me and he said my friend you are ready to get back to work since it is remote. My sister couldn’t believe it because she thought I was not going to be working until 2021. It felt amazing to receive the go ahead and get back to doing what I love in higher education.
Diagnosis: Marfan syndrome
In October 2020, I had my telehealth meeting with the geneticist. He confirmed to me that I do have Marfan Syndrome which was caused by a genetic mutation. I was not shocked about the results since it was the only logical reason for my sudden heart surgery.
I had my 6 month visit with my surgeon in January 2021. He said that I was doing great and to keep up the great work based on the CT scan that was done. Another great milestone moment. My family was incredibly happy. Sadly, my marriage ended that month — in part due to the strain of knowing that I had a 50% chance of passing Marfan onto any children I might have.
One of the best pieces of advice I received during this dark time was from a former colleague I worked with at Georgetown who said I should see a therapist. I am incredibly happy I made that decision. Since February 2021, I have been speaking with my therapist twice a month and it has allowed me to gain great perspective on the events that happened over the year of my dissection and recovery. I was able to discuss my mental health issues and most importantly discuss Marfan Syndrome.
My therapist asked me to write down the list of pros and cons of Marfan Syndrome. I noticed that the pros totally outweighed the cons. I am healthier now than I ever was. I was weighing 272 lbs before heart surgery. As of today, I am back down to my basketball playing weight of 202 lbs. The weight loss was because I am now on a low sodium diet and I walk 6 to 7 miles daily in the morning. I became closer to family and friends and have grown spiritually.
The main lesson I learned from therapy really is the art of forgiveness. In order to move on to the next chapter of your life, forgiveness of past events is the key component. It’s easy to forgive events when the situation is not impactful. It’s hard to forgive when the situation alters your life in significant ways. With Marfan Syndrome, I have come to peace with Marfan syndrome, and now am embracing this new chapter in my life.
I share my story because not only is it cathartic and therapeutic for me, however, but because I also feel that it could potentially help someone else. Each of us has our story with our diagnosis with Marfan Syndrome and the many ways it has impacted our lives. I have read different stories of people with Marfan through The Marfan Foundation’s website, and it inspired me to reach a point of forgiveness and sharing my own story.
After a local news story about my health journey aired in January 2022, my then future wife and I held hands for the first time. Cynthia and I got married on September 9, 2023.
A new chapter is being written in my life and the same goes for each of you. Continue to remain positive in your journey with Marfan Syndrome and related conditions, know that we have an amazing community here that loves and supports us.
I leave you with one of my favorite quotes by Victor Hugo in Les Miserables: “Even the darkest night will end and the sun will rise.”
Please share this story to help save lives. To learn more about Marfan syndrome, related conditions, and risk, visit: www.marfan.org
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.