Exercise, Lifestyle and Life Experience with Dilated Aorta?

Posted by davidtrey @davidtrey, Jul 30 9:44pm

Hey all,

This seems like a wonderful community, much better than posting on Reddit or Doom Google Searching. I’m glad to have found this place.

I am a 44m, 6’4” and 230lbs. I have been very active my entire life, weight training, body building, tennis, hiking, and did CrossFit for a few years. It was in CrossFit that I developed some persistent PVC’s which faded when I left the sport.

I have had afib 4 times, all 4 times successfully cardioverted. It wasn’t until this most recent time that I was also placed on Flecanaide to control my rhythm and recommend for a consult for an ablation.

During this time and after a recent echo, I was informed that my Aorta and Aortic Root are both dilated to 4.3cm. My cardiologist joked that if I was her size it would be considered an aneurysm but given my height and size it’s only mild dilation.

I will be honest when I say that this diagnosis has sent me into a spiral. I have developed some depression and anxiety in just a few weeks since this diagnosis. I made the mistake of googling looking for reassurance and came across every worse case scenario. I’m a dad and am worried what this will mean for my daughter.

I’m reaching out to hear from individuals with similar experiences. How is your lifestyle?. What are do’s and donts you’ve come across? When I asked my cardio for recommendations on exercise she was pretty vague and made some generalizations - don’t life too heavy, don’t raise your blood pressure too much, etc. I am hoping some folks have some life experience and guidance they’re received to pass along.

I am glad to return the support if I can do anything at all for anyone here. ❤️

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

anonymousamerican | @anonymousamerican | Sep 4 1:55am

I am a heart patient with 5 stents, 3 in my LAD, I've had 3 heart attacks and diagnosed with congestive heart failure, and now, aortic ectasia.
I've been taking cayenne pepper capsules almost daily for 3 years now.
According to Barbara O'Neil, cayenne pepper makes the blood thinner and heals blood vessels of any weak spots or tears, and possibly preventin aneurysms. I'm counting on that right now due to my own heart health challenges.

Best of blessings to you.

houston13 | @houston13 | Aug 18 5:00pm

In reply to @geraldhumphrey "I am in a similar situation as you. I have a 4.2 cm ascending aortic aneurysm,..." + (show)

The best advice I can give you is to find a cardiologist who specializes in aortic diseases, they do all their research in the subject (they also normally specialize in bicuspid valves). Your aneurysm is small so maybe too early for a surgeon. If you have seen the video from Dr Prakash in this thread he covers the effects of exertion on BP and therefore aneurysms. The main issue is when exertion causes BP to rise, and that normally happens when you hold your breath and grunt for spine stability and pull/push heavy weights (which may include overcoming body weight like when doing crunches). Not knowing how to properly breathe when exerting is a big reason, it takes practice and discipline since sometimes we just forget to breathe especially if the effort is too high.

Think about the efforts that you are making and whether they are so hard you are not properly breathing while doing them. Limit the effort to what you can comfortably do without major exertion.

For context, I had a 5.2 cm ascending aneurysm and still have a bicuspid valve. The aneurysm was repaired in 2020, the valve will have to be replaced at some point.

Peace and all the best

davidtrey | @davidtrey | Aug 18 3:56pm

Hi Gerald,

My doctor was also very vague when I was diagnosed. A lot of what I see online from others involves maintaining good blood pressure and no “valsalva maneuvers”, essentially holding your breath to pick up something heavy.

I am certain others will lend their advice, just letting you know the information I’ve received.

geraldhumphrey | @geraldhumphrey | Aug 18 2:33pm

I am in a similar situation as you. I have a 4.2 cm ascending aortic aneurysm, bicuspid aorta leaking valve. I am still working and doing a manual labor job that requires a lot of lifting, tugging, pulling, straining, etc. I read on line that I should not be doing any of that. The 1 dr I have seen so far told me to go back to work and not lift anything over 100 lbs and if I have chest pain to get to the hospital quickly. Should I I be restricted? I am getting a second opinion. If any drs read this then give us your opinion on what is safe to do.

bobjoseph | @bobjoseph | Aug 17 1:33pm

In reply to @bignelie "As a fellow 6'4" + size person who loves sports/exercise, I was in your shoes a..." + (show)

@bignelie

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.

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!

Jump to this post

Your article is excellent and very helpful in my case.

Thank you!!

mphaddican | @mphaddican | Aug 16 8:25am

In reply to @houston13 "Hi, here’s one of the videos I mentioned: https://youtu.be/yhMEZ0glPqc?feature=shared Hope you find it useful. At 4.3..." + (show)

My husband had a bypass many years ago and later a stroke. All over at least 6 yrs ago. Internist recommended ultrasound of his carotid. His results were 50% blockage on one side and 70% on the other side. He was complaining that sometimes when he lays down he fills dizzy.
My questions are:
Can you take medication to resolve this and if not is there another test to determine which is the proper procedure to correct this?
Thank you in advance
Marylyn

davidtrey | @davidtrey | Aug 4 2:11pm

In reply to @bignelie "As a fellow 6'4" + size person who loves sports/exercise, I was in your shoes a..." + (show)

@bignelie

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.

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

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!

Jump to this post

What an incredible reply. Thank you so much. I read your reply out loud to family and must have read it 5 times over myself. Thank you so much for the time and effort you’ve put into this. You’ve had a positive impact on my life.

I had my Echo in early July and have my CTA in late August. The CTA was mostly ordered to ensure my heart is ready for an ablation (4x with Afib over 20 years), but now since the worry and fear over the Aorta, I’ll be be very interested in the results for that reason also.

I spoke with my Cardio about genetic testing and she noted she’d only want to pursue that if I reached 5.0. I may speak with my PCP on the matter also.

Ironically 2.5 years ago my Cardio noted that my Aorta was 4.1 but showed no concern. It meant nothing to me since she showed no concern so I just carried on with being a gym bro, heavy squats and deadlifts, 6 days a week lifting heavy, creatine etc. a few weeks ago when she mentioned 4.3, I now had the MyChart app to log into and interpret the results online. That’s where the scare came from and I’ve been in my head ever since.

I haven’t touched a weight in a month, my dogs have earned the benefits as they’ve never had so many long walks. I’d love to get into some light weightlifting again just to feel “normal” and like you am in a state of mourning for the life I lived for decades. I’m not sure what the next step is.

But thank you, seriously, so much. This can be a very lonely feeling and knowing I’m not alone and someone so similar to me is working through this has helped a lot.

davidtrey | @davidtrey | Aug 4 1:53pm

In reply to @kjlavall "Once you get over the initial shock just take a breath. There are lots of people..." + (show)

Thank you for taking the time to type this all out and to reply. It means a lot to me. I feel like I have been in “initial shock” for going on 3 weeks now since I was diagnosed.

2.5 years ago I was at 4.1 and my cardio didn’t really raise an eyebrow. Unfortunately during this time I continued to lift heavy, do CrossFit movements and lift without regard. This time around I had the MyChart app and dug into the results which sparked the huge scare, reflection and worry at 4.3. I will definitely be scaling back on the activity but now in the worrying phase where I’m wondering what I do may or may not impact my situation. Also wondering if my roof matching my aorta a 4.3 is adaptive development or something to worry about.

I do have a CTA in several weeks along with a stress test in 2 months. The time between appointments just moves so slow and I need to stay out of my head and off of Google.

houston13 | @houston13 | Aug 2 10:47pm

In reply to @davidtrey "Thank you so much. I am amazed at the kindness I have found here and the..." + (show)

I’m doing great thanks, I started exercising again a few months after surgery, carefully as the sternum and in my case my leg took time to heal sufficiently. 5 years on I’m doing great, I’m very active and exercise 4-5 times a week, fairly intensively. Took early retirement and am trying to enjoy life with my family as fully as I can.

We, the ones that found out we had the aneurysm before it became an emergency, have to feel fortunate, we can monitor, plan and prepare before it becomes an emergency. This forum has a few people that went through dissections and survived, the majority of people don’t, most of them didn’t know they had it until the emergency happened.

As I said before, you will be ok, yours is small and you can track its growth (if it does) and plan

Keep yourself healthy, listen to your Drs and ask as many questions as you need!!

davidtrey | @davidtrey | Aug 2 7:00pm

In reply to @houston13 "Hi, here’s one of the videos I mentioned: https://youtu.be/yhMEZ0glPqc?feature=shared Hope you find it useful. At 4.3..." + (show)

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?

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