Updated: Feb 15
My story involves many “by chances” and miracles. My Marfan's diagnosis was a “by chance” moment when I had my first son at his pediatrician appointment. Had he not started that conversation with me and set up genetic testing for my son and myself, I would not
be here to write this story. For that, I am eternally grateful.
My aortic dissection story starts in 2014, just after giving birth to my youngest son. I had only been home from the hospital a day. As I sat down in the chair, my back erupted in pain. I thought I might have pulled something in my back during labor or maybe it was due to do the epidural. No matter what I did, the pain would not go away. So, I decided to leave my three-day old son with family and go to the ER.
I lived in a rural area in East Tennessee so the hospital was quite small. I tell them of the excruciating pain, as my blood pressure goes through the roof. I explain that I have a genetic disorder, Marfans, and that I just had a baby. They run tests, take x rays and scan my head. They didn't find anything. I remained in the ER until my blood pressure came down to a reasonable level and was then sent home with pain medication and no explanation concerning the pain. It appeared no one at the hospital was familiar with Marfans.
The next day I saw my regular physician, he put me on blood pressure medication and a beta blocker due to my blood pressure still being very high and because of the Marfans. He too had little knowledge concerning my condition. He ordered an echocardiogram and it came back fine. I continued to get 'echos' for the next few years until 2018. That year, my 'echo' changed everything.
The technician performing my echo happened to look at just the right angle and found a dissection. To this day I am very thankful for her thoroughness or my story could have had a very different ending. She immediately called another tech into the room to verify what she saw...then, of course, I started to get quite concerned. They kept asking me if I'm having any chest or back pain and I keep telling them I felt fine. Since I wasn't experiencing any pain, they sent me to my primary doctor, who ordered a CTA. This is when they found my Type B dissection going from my descending thoracic aorta to my illiac arteries in both legs. I also had an aneurysm in my thoracic aorta that is almost 5 cm. Luckily, I wasn't having symptoms or pain so they let me go home. This is when the plan starts to form to repair my aorta.
In 2018 my dad successfully had his aortic root repaired at the Cleveland Clinic. His surgery went very well, so I knew that's where I wanted to go. Once they had all of my records, they wanted me to have surgery sooner rather than later. In January 2019, I had a Thoracic Endovascular Repair followed by a Coil Embolization in August that same year. After my second surgery, the doctors felt they had me stable.
I have shared my story with nurse friends and they all say that I a
m a miracle. Someone definitely was watching over me the past 5 years. I am so thankful for all the doctors and nurses, my family and friends.