Dilated thoracic aorta

One of the first things I was told after my diagnosis was not to lift anything over 40 pounds. So be very careful with weight lifting and I would walk rather than run...just my thoughts

Can a person have surgery before Dr recommends? I know mine is small compared to what I am reading about but it is terrifying. What size is yours? Has it grown much? I live in a small town so information is scarce and to see my dr is tough.

I had a complete dissection at age 50. I would not recommend it to anyone. You're much better off having the surgery if your doctor says you need it. It's a lot but I promise that it's much worse for you if dissects suddenly. Your survival rates drop like a rock. Scheduled surgery allows you, your family, and your providers to do this massive surgery in an orderly, safe, way. Trust me. Emergency open heart surgery after your aorta tears is a lethal situation. I am now 59. I'm really good. I love my life. I survived but it was by the skin of my teeth because it happened suddenly. Now, nine years later I worked all weekend in the yard. I did my 10,000 steps. I lived my life. You will be okay. Trust your surgeon but if they recommend surgery, listen to them. They want you to survive and thrive. Your family wants you safe. You're young and you will get through this. Here's me with my surgeon and my ICU nurses in San Diego a year after my emergency surgery. Your life is going to be great and you're going to fine.

I am so happy for you! It is great you have had such great success. Did you know you had the dilation prior? If so what was it dilated to?

I am also wondering if there are Dr that people can talk to and ask questions?

That ICU picture is my nightmare scenario. I have panic attacks thinking about not being able to breathe because of stuff down my throat. I hope you were sedated the whole time.

Hi Kacey,
My brother died a sudden unexplained death last October. We don’t know the reason because there was no autopsy. My airtic aneurysm was subsequently discovered in routine heart tests. Do you have a cardiologist yet. My aneurysm is 4.8 in my aortic root and they are not recommending surgery yet. Where is your dilation? I met with an aortic specialist at Mayo Clinic last week and she said my risk of a rupture is 1% or less at this point. I’d rather it be zero, but the risk of open heart is higher than 1%- so im in no hurry. the biggest thing you can do is make sure your blood pressure in as good as you can get it. I bought a home blood pressure cuff and take it pretty much every day right now. the reaon they advise against lifting heavy weights is that tou have a brief but dramatic spike when lift heavy weights. my stress echocardiogram showed my blood pressure rose to 160 when my heart rate reached 140. my doctor says i can do any cardio as long as i keep my heart rate below 140. Hope this helps. But definitely find a cardiologist experienced with this if you don’t already have one.

Thank you Chrisn61-this is very helpful information. I am sorry to hear about your brother. My father died suddenly and we also don’t know if it was from a ruptured aorta. That was why I went in to the cardiologist. Was that your reason? I do have one. He is very hard to get ahold of or into. I live in a small town. He ran all the test and everything was good except my echo. It showed the aorotic root of 4.1. I go in Thursday and will see how much it has grown. I have so many questions but can’t get into him until late July. They just run the test Thursday. I am going to talk to the thoracic surgeon to get his input.
I can’t get this out of my mind though. Does this happen with you too?

Yes, I went in because of my brother's heart attack. We also had an uncle who died suddenly when he was in his early 40's - no autopsy so we don't know the actual cause even though it was called a heart attack. I reached out to a therapist to talk about this as it feels like a double whammy- grieving the loss of my brother and worried if I have what he may have had. I've reached a place where I'm still very proactive on understanding the issues- but not nearly as anxious as I was initially. Do you have mychart or something like that? I've been able to get my results ahead my dr visit follow ups. I am also going to be getting a DNA test for genetic markers for this. The testing won't be conclusive if nothing shows up- but if I do have the marker they will likely suggest operating sooner. How is your blood pressure? That is the thing that increases risk with this. Mine has never been high, butI've been able to bring it down about 10 points with diet and exercise so far. I will find out if the cardiologist thinks I should go on meds to lower it even more when I talk to him on Thursday. I've been able to do all my follow up visits with Mayo virtually so far.

No idea. It hit me like a train.