It's Survivor Series Saturday Featuring Kristina Schrameyer!

We're honored to introduce the newest story in our Saturday Survivor Series featuring Kristina Schrameyer. Thank you so much for sharing your story to the Aortic Hope community.

*Ready to Share Your Story?*

- Submit your story: Click HERE

- Past storytellers, share your update. Click HERE

*Let's Connect Heart-One Beat At A Time Together!* 🌈 Share your story, inspire others, and be the shining star in someone's life! 🌟

The Aortic Hope Survivor Video and Blog Series form allows Aortic Hope to collect basic information for Survivor Series video and blog participants. This information will not be shared with anyone except the Aortic Hope administrative members. Videos and blogs submitted to Aortic Hope are used solely for the purpose of sharing with others; no monetary payment will be made.

Kristina's Story:

My dad had a Type B aortic dissection in 1996. He had a rough time of it, but he survived and went on to live another 25 years—productive and good years. I hadn’t heard of aortic dissection until he had his. His doctors felt that he had Marfan syndrome and recommended that any of his children who took after him be checked.

I took after my dad. While I’m not exceptionally tall—I’m only 5’8”—I had the long arms, legs, fingers, and toes that can be associated with Marfan. My aorta checked out fine, and at that time there was no genetic testing for Marfan syndrome. My cardiologist decided to go ahead and put me on a beta blocker as a preventative.

Fast-forward to 2018. My cardiologist had retired, so I decided to see if I could be evaluated at the Marfan Clinic at Washington University. I was accepted and tested, and was confirmed to have Marfan syndrome through genetic testing.

At that point, my aortic root and my ascending and descending aorta had been stable for years. In March of 2023, I had a CT scan that showed everything was still stable. In fact, my ascending aorta measured around 3.7 cm. There seemed to be nothing to worry about.

So on June 6, 2023, when I had a really strange pain go through my upper torso, I didn’t really think it could be a dissection. Everything had been fine just a few months earlier. Having a dissection wasn’t something I thought I needed to worry about.

I decided to try to walk off the pain, but only made it about halfway to the next room when I became lightheaded. I sat down on the floor just in case I passed out-I didn’t want to fall and cause more issues.  After a few minutes, I started to feel better and decided I needed to get up because my lower back was starting to hurt.

I was shocked, to say the least, when I realized that I couldn’t move my legs—they were completely paralyzed.  Thankfully, the paralysis only lasted for about 30 minutes. 

My co-worker called 911, and the EMTs didn’t seem overly concerned. My vitals were good, I was coherent, and I don’t know how familiar they were with aortic dissection or Marfan syndrome. I did tell them about my family history and my Marfan diagnosis.

I was taken to the nearest ER and was actually put in the waiting room for a few minutes until a room opened. Once I got into a room, things moved very quickly. As soon as the ER doctor heard that I had Marfan syndrome and that I had experienced a very strange chest pain, he ordered a CT immediately.

Within a few minutes, he came in and told me that I was being airlifted to St. Louis because I had a Type A dissection—and that the dissection had actually extended all the way to my right iliac artery.

One minute I was at work, and the next I was being told that I had a life-threatening aortic dissection and was being airlifted to another city for emergency surgery.

I was airlifted to Barnes-Jewish Hospital and went into surgery within a couple of hours. I was in surgery for about seven hours, and thankfully, I had an absolutely wonderful surgeon in Dr. Puja Kachroo.

I was incredibly fortunate to have a relatively uncomplicated recovery. There were a few minor setbacks here and there, but nothing compared to what my dad went through or what I have read from other survivors.

I was able to return to work part-time just eight weeks after my surgery and went back full-time a month later.

My descending aorta has widened some since my surgery, and I still have a residual dissection in my abdomen, but overall, I am living a normal life.

Looking back, there is something almost full-circle about my story. My dad’s dissection led to my Marfan diagnosis. Knowing that I had Marfan ultimately helped the ER doctor recognize how serious my symptoms could be and get me the CT scan I needed quickly. I will always wonder what might have happened if I hadn’t known.

The only restriction I really have is that I can’t lift anything over 20 pounds, and I can’t ride roller coasters—which isn’t something I did much of anyway.

It is a bit scary not knowing what the future holds, but honestly, no one really does.  It’s very unusual to have a dissection when your aorta is measuring 3.7, and that does concern me for my descending aorta, but I’ve decided I can’t let that hang over my head and affect how I live my life. 

I lost my husband suddenly right after he turned 50, so I know how quickly it can all be over, and I’m very grateful that I got a second chance. 

I am so incredibly thankful to be living a normal life—something that I know is a gift and a blessing. I don’t take any of it for granted, and I’m thankful every day that I wake up because I know how differently everything could have turned out.

Kristina Schrameyer