Exercise, Lifestyle and Life Experience with Dilated Aorta?

Hi, here’s one of the videos I mentioned:

Try to find a cardiologist who specializes in aortic diseases, not all of them do, it makes a big difference. The Dr in the video happens to be my attending cardiologist , I see him once a year, he answers all my questions, never vaguely, always with clear recommendations.

Anxiety after hearing the news and feedback on exercising are probably two of the most asked questions in this forum, do a search on the topics and you will find lots of information. You are in the right place, everyone here has gone through what you’re going through.

The right cardiologist will set a follow up protocol, he/she will determine the growth rate of your dilation and that will be key. Having the right care team (in my case it included the best surgeon I could find) with the right answers it’s huge to help with anxiety (at least for me). Stay active, exercise is the best medicine for anxiety, but be aware of the limitations. Have you tried yoga? . Lastly think of getting professional help, a good therapist can help

You will be ok

Thank you so much. I am amazed at the kindness I have found here and the kindness demonstrated in your post. I sincerely appreciate the time you took to reply.

I love that your cardio answers your questions and is direct with responses. I have been with my cardio since my first afib episode 20 years ago and feel a level of attachment but man, all of those vague responses to some of the most important questions I’ve ever asked in my life is a huge bummer.

How are you doing since all of your surgeries?

Once you get over the initial shock just take a breath. There are lots of people walking around with aneurisms that don’t know it and will live normal lives. Be thankful yours was spotted. Mine was identified back in 2009 when I had a calcium scan done. It was 4.2cm. Considered small and depending on age, high normal in size but not an aneurism. It is now 4.8 after 16 years. I just continued to live my life over the years which included weight lifting, scuba diving etc. live healthy, listen to your doctor, take you meds, get your scans and don’t let it consume you. It may never grow at all. If they recommend yearly scans make sure to ask about echocardiograms in stead of CTs every year to minimize radiation exposure. echos are not as accurate but at your size it is probably accurate enough.

As a fellow 6'4" + size person who loves sports/exercise, I was in your shoes a while back when I joined here. It shook my identity of who I am if I can't play basketball or lift a piano or squat etc....So I feel you for sure.

Good news is 6'4" puts you in an low risk category with a 4.3 size (https://www.jtcvs.org/article/S0022-5223(17)32769-1/fulltext) and this chart attached is helpful I found helpful from https://www.sciencedirect.com/science/article/pii/S0022522317327691#undfig1.

If it is quick growing and/or between 5 and 5.5 seem to be where the risk grows. We are both 6'4" and that is actually a benefit here for dissection risk and size.

I will state if they did not do a contrast CT, would advise it. Mine had the wrong size measured (smaller) with the non-contrast CT and echo (echo was closer though). It was actually in 5 cm range once measured with a contrast CT. Echos not considered a gold standard for measurement of this type of issue but is for Valve stuff. Also do genetic testing if you haven't got that scheduled already.

When it was believed to be smaller, it was recommend constant exercise without extremes. So biking was a check, sprints, mountain biking or hill runs through high grades was avoid if heart rate spikes or if I can't sing or talk. If I wante to do mountain or hills, use an ebike to keep the heart rate in a safe range. Lifting reasonable weight (lower amounts, more reps, don't hold your breath) check but not heavy lifting to increase blood pressure. Swimming constantly okay just no sprints. Yoga and Taichi and other slow flow stuff good but HIIT/Crossfit types of exercises are off the table. No combat sports or anything where someone could hit me in the chest like basketball. Etc, etc...You get the theme.

Consistent, measured exercise = safer/lower risk of a dissection
Fast heart rate or blood pressure spiking exercise or impact = higher risk dissection

For you, got to decide risk vs reward. Its a balance. Like you, I find a lot of community in sports and in intense exercise. Also I have read/heard athletes (https://www.acc.org/Latest-in-Cardiology/Articles/2024/09/09/10/21/CV-Sports-Chat-Dilated-Aortas-in-Athletes) and tall people just have a higher risk for these things for it appears no known reason if no family or genetic history has this. That sucks and I fall into this but it is a thing.

When I thought it was smaller and had to live with this for a long time before surgery, started a journey. First I had just slowed it down for a bit and shift my mentality while learning. Morned my loss of intense exercise and how it felt. Started to view it as a challenge a new way. Replace intensity with distance for example biking and swimming. Tried to keep my heart range steady in other exercises. I reached out to a science base trainer who actually had an anatomy background to discuss good ways to shift my lifting, training, and activity. One of the lifting changes discussed was lower weights, more reps and work on flexibility and moving up in weight slowly if at all. Also simply singing or talking during exercise to gauge exertion since I usually focus on the push. I did have to back off that one and stop lifting weights since my non-contrast CT and echo disagreed a lot in the size with each other during diagnose period and then due to my contrast CT basically moving me to a higher risk category. Before that though, found that it was possible to live a active, exercise focused life just with modifications and a different mentality.

You got this. You overcome challenges like you do in sport constantly. Hopefully my journey helps you feel a little better as you begin yours. Its a start of something new!

Hi, here’s one of the videos I mentioned:

Try to find a cardiologist who specializes in aortic diseases, not all of them do, it makes a big difference. The Dr in the video happens to be my attending cardiologist , I see him once a year, he answers all my questions, never vaguely, always with clear recommendations.

Anxiety after hearing the news and feedback on exercising are probably two of the most asked questions in this forum, do a search on the topics and you will find lots of information. You are in the right place, everyone here has gone through what you’re going through.

The right cardiologist will set a follow up protocol, he/she will determine the growth rate of your dilation and that will be key. Having the right care team (in my case it included the best surgeon I could find) with the right answers it’s huge to help with anxiety (at least for me). Stay active, exercise is the best medicine for anxiety, but be aware of the limitations. Have you tried yoga? . Lastly think of getting professional help, a good therapist can help

You will be ok

As a fellow 6'4" + size person who loves sports/exercise, I was in your shoes a while back when I joined here. It shook my identity of who I am if I can't play basketball or lift a piano or squat etc....So I feel you for sure.

Good news is 6'4" puts you in an low risk category with a 4.3 size (https://www.jtcvs.org/article/S0022-5223(17)32769-1/fulltext) and this chart attached is helpful I found helpful from https://www.sciencedirect.com/science/article/pii/S0022522317327691#undfig1.

If it is quick growing and/or between 5 and 5.5 seem to be where the risk grows. We are both 6'4" and that is actually a benefit here for dissection risk and size.

I will state if they did not do a contrast CT, would advise it. Mine had the wrong size measured (smaller) with the non-contrast CT and echo (echo was closer though). It was actually in 5 cm range once measured with a contrast CT. Echos not considered a gold standard for measurement of this type of issue but is for Valve stuff. Also do genetic testing if you haven't got that scheduled already.

When it was believed to be smaller, it was recommend constant exercise without extremes. So biking was a check, sprints, mountain biking or hill runs through high grades was avoid if heart rate spikes or if I can't sing or talk. If I wante to do mountain or hills, use an ebike to keep the heart rate in a safe range. Lifting reasonable weight (lower amounts, more reps, don't hold your breath) check but not heavy lifting to increase blood pressure. Swimming constantly okay just no sprints. Yoga and Taichi and other slow flow stuff good but HIIT/Crossfit types of exercises are off the table. No combat sports or anything where someone could hit me in the chest like basketball. Etc, etc...You get the theme.

Consistent, measured exercise = safer/lower risk of a dissection
Fast heart rate or blood pressure spiking exercise or impact = higher risk dissection

For you, got to decide risk vs reward. Its a balance. Like you, I find a lot of community in sports and in intense exercise. Also I have read/heard athletes (https://www.acc.org/Latest-in-Cardiology/Articles/2024/09/09/10/21/CV-Sports-Chat-Dilated-Aortas-in-Athletes) and tall people just have a higher risk for these things for it appears no known reason if no family or genetic history has this. That sucks and I fall into this but it is a thing.

When I thought it was smaller and had to live with this for a long time before surgery, started a journey. First I had just slowed it down for a bit and shift my mentality while learning. Morned my loss of intense exercise and how it felt. Started to view it as a challenge a new way. Replace intensity with distance for example biking and swimming. Tried to keep my heart range steady in other exercises. I reached out to a science base trainer who actually had an anatomy background to discuss good ways to shift my lifting, training, and activity. One of the lifting changes discussed was lower weights, more reps and work on flexibility and moving up in weight slowly if at all. Also simply singing or talking during exercise to gauge exertion since I usually focus on the push. I did have to back off that one and stop lifting weights since my non-contrast CT and echo disagreed a lot in the size with each other during diagnose period and then due to my contrast CT basically moving me to a higher risk category. Before that though, found that it was possible to live a active, exercise focused life just with modifications and a different mentality.

You got this. You overcome challenges like you do in sport constantly. Hopefully my journey helps you feel a little better as you begin yours. Its a start of something new!