Aortic Aneurysms – Introduce yourself & meet others

Thank you both so much for reaching out and you both are 100% correct. We are ahead of the game and this is a wake up call for me. Appreciate everyday, look at things a little differently and adjust how I choose to spend my time.

You're not alone. I find it so helpful to know that others are in the same boat as I am. This is scary but I think of it as a wake-up call or a jolt to remind me to pay attention to how I spend my time and live my life to the fullest. We're all going to go someday, but this time can be all the sweeter for this new perspective.

Thank you so much for your encouraging posts. It's good to know you're available. That's very kind of you.

Thank you so much. It is a great Blessing from GOD to hear you and your positive story and not just think of all the negative things.

Relax. You're going to be okay. You're ahead of 99.9% of all aortic dissection patients because you KNOW. I suffered a complete dissection at age 50 in 2015. I am hear to tell that story. You are going to be okay. The CT will alert them to changes. If your doc says have surgery, have surgery. You can do this. I did it and it was a nightmare to have a sudden and complete Type A1 aortic dissection. BUT: You know in advance. That's the difference between having a blowout at 75MPH on your front right tire vs. making a plan to go into the mechanic's shop and having the tire replaced when you see that it has a bulge. Don't panic. You're not alone. My contact information is attached to my name. Feel free to call or email me directly if you want to talk. I knew nothing about my aorta until it blew and then it was an all-hands-on-deck nightmare scenario (42 minutes from the start of the dissection to undergoing open heart surgery on a business trip in San Diego). If I had known what I was in for, I would have done the surgery well in advance of the ultimate dissection. If you catch it early LIKE YOU HAVE, your chance of full recovery is excellent. You're going to be okay. Call me if you want to chat. I am a non-medical expert on aortic dissections. I can tell you things that the doctors can't because they have never suffered and survived a complete dissection. Peace.

Hello, my name is Andy and I am a 53 y/o white male who just recently (this week) found out that I have a 4.7 cm Ascending Aortic Aneurysm. I am 6'2, 225 lbs and have been active all my life. I happened to find this on a routine CT screening for a Cardiac Calcium Score. The only reason why I even asked for the test to be done was for peace of mind. Well, my Calcium score was only 51 but what they did find was the aneurysm (Totally shocked). I have battled my entire life with Anxiety (Probably because I have been a nurse for more than 30 years in ER and my mind goes to the worst situations possible). Now this- How does one cope? Is this a death sentence? My Cardio Vascular Surgeon wants to watch it for 6 months and re-do the CTA to see if it has gotten worse. He stated surgery (Open Heart) is the only way to correct it and that usually is not needed until at least 5.5 or 6 cm, when the risk of not doing the corrective surgery outweighs the risk of surgery. I am sorry I am rambling, but my mind just spins in all of this yuck. Has anyone else been here? Are there people who have lived with this for a while? Can we live a normal life with just some moderation changes? Looking for positives through all of this.

Hi Bitsygirl, Thanks for the advise. I have seen so many nutritionalists and dietitians over the past 10 years. Each was referred by a specialist for one of my conditions.None of them knows how to diet for a heart condition as well as having gastroparesis- two different diets. I try to be low carb and low fat buts it’s hard. I love fresh fruits and vegetables but they aren’t good for the gastroparesis or EPI. So I do my best.Everything is done in moderation.Shaylyn4

@shaylyn4: Sorry to hear about your conditions.

I worked for a while with a dietician that focused on heart health. It was a worthwhile experience. I'd suggest you seek out a dietician or other professional for some advice. I think you have a tricky problem to solve.

I'm sure I'm making a nuisance of myself with my cardiologist because I keep sending questions through the Patient Portal. I get prompt answers from his nurse and she's very helpful and explains things. I believe it's necessary to be assertive (not aggressive) and ask questions and let your medical team know you're anxious. I make no bones about it. I have a follow-up appointment to my July CT scan in September rather than waiting for a year as I was advised to do. A year! I don't want to feel this anxiety for a year. I need some answers now. Research, this group, and messages to my doctor are helping me get a realistic assessment of my condition. Wandering in ignorance is no way to feel safe.

Hi Pamela - I agree the Docs typically only tell you the minimum. My apt back in June whilst perusing my Echocardiogram was “blood flow all ok, heart plaque diffuse enough so no issues, oh but hang on you’ve got a 4.4 root / ascending aneurysm but no issues we can review in 12 months - no issues until 5.5. Keep on with your healthy lifestyle and here is a script to double the bp med..”. I had no reaction as I didn’t understand what he was talking about. He then went onto the next patient (1 of several he had to attend to for the rest of the afternoon). I guess they know that if they talk too much at that initial stage they run the risk of needing to talk / respond to ill informed Q’s for a further 5 or 10 minutes and mucking up their schedule ☺️