Exercising with a ascending dilated Aorta

[Tedthedog]

What exercise does anyone else do with a dilated Aorta ? Apart from walking , which is the only thing I do at the moment.

I’m a but nervous as I don’t want to put added stress on my chest/heart.

[JulianM]

I was diagnosed 5 years ago at 59 by sports cardiologists, when my aorta was around 4.5-4.6 cm.

They advised me to keep exercising, but to stop all competitive sport. This was a big blow at the time, because I was very much into triathlon and regularly competing with the GB Age Group team at European and World events; I'd just qualified for the standard distance Worlds for the first time ... and I had to drop out of everything because my travel/health insurance for racing was invalidated the moment a cardiologist told me not to do it ...

They gave me a limit of 80% of maximum heart rate, but advised not to spend long periods at that level.

As I have spent many years training with heart rate, I found that I could still run, ride my bike and swim with no problem - just not so fast. I've been out on long bike rides with slow training groups - up to 160 km in a day, though usually more like 70 km. I've only run on my own - indoors on treadmills, outdoors including some hills, up to 10 km - and I've not even done Parkruns.

Five years on, I know that my aorta is fairly stable at 4.8 cm and that I have no genetic markers for known high risk aortic conditions. My blood pressure is in a very healthy area, and my heart valves are in full working order. I'm also now on low dose irbesartan, which is causing me no problems (annual kidney test shows no change, no problems with anything else) and MIGHT be reducing my risk of aortic dissection and of further growth.

I have retired from full time work - which used to involve commuting on my bike and running up and down three flights of stairs all day - and find that I need a focus for my fitness training. I have fallen back in love with swimming, which I'm now doing five times a week, 3,000m in just over an hour. I've recently bought a fancy swim watch (Garmin Swim 2) which turns out to be very good at recording my pulse from my wrist while I'm swimming. It can also be loaded up with my planned training sessions, which is great for me (I have 30 years of coaching experience to draw on: I know this is not for everyone).

In the light of all this, I am now planning to make a limited return to competitive sport. Specifically, I have entered 6 events in a Masters swim'ming gala later this month, all towards the longer distance, endurance end of the spectrum. So, I'm planning to do 800m, 1500m and an open water 2,500m swim on freestyle, a 400m individual medley, and 200m events in butterfly and backstroke. I've completed all of these repeatedly in training, and I will be quite happy to beat my training times in 'competition' - I'm nowhere near the standard needed to contest first place, set records, etc. I'm not doing any really 'sprinty' events, and no relays or team swims where there could be pressure to go flat out. I'm using a temporary membership of British Swimming, so I won't even be scoring team points for my (former) club.

The events I'm taking part in are all in London, within a fairly short ambulance ride of major aortic treatment centres. I've fully disclosed my medical circumstances to the event organisers, who have said they will put a risk assessment in place and make the first aid team aware of it. I have also, of course, discussed all of this with my specialist cardiologist, who wished me 'good luck' and accepts that I'm not totally insane, while also saying, as I would expect, that the risk is not zero.

I will drop out of any or all of my events if I don't feel completely fit and well on the day.

I will monitor how my heart rate responds throughout my races, and if all seems to go well through the events, I'm considering going back into training in coached sessions.

After next year's clinical check on my aorta, I may be looking at more competitions.

I honestly don't know what to advise anyone else to do in relation to safe levels of sport and exercise, and it's extremely hard to pin down what the real levels of risk are.

Ultimately, as one of my (very supportive) GPs said to me, early after my diagnosis, some of these questions are about one's appetite for risk, one's personal values, and are completely outside medicine.

Best of luck!

[Tedthedog in reply to JulianM]

Hi Julian

That's impressive stuff and good for you that you have found a way back to doing something you love and are clearly good at it..

My cardiologist says I should do light exercise and not lift anything heavy... Of course that can means lots of difference things... Your GP right some of it about what you want to do and if my mother hadn't died of the same thing (undiagnosed) I might be more adventures.

Good luck with your competing it so good to hear someone with the same problem doing so much

[JulianM in reply to Tedthedog]

I completely understand that with your family history, you're going to be in a different place to me, psychologically. And your level of risk may be different, too. It helped me to have seen my scans, and discussed them with my cardiologist: there's nothing about the shape of my aorta which screams 'high risk'. But there are no guarantees.

[Tedthedog in reply to JulianM]

Are you under the NHS do they show you your scans? Can they see what condition the Aorta is?

[JulianM in reply to Tedthedog]

NHS - yes, at a major teaching hospital. The first time I had a full MRI, the consultant saw me face to face and we looked at the 3D images together on their PC. I suspect this was because the radiologist had made a very alarming report and the consultant needed to show me why their own measurements were different (and much smaller) than the ones in the report ... just in case I got to see the report and exploded or something.

The scans don't show everything worth knowing about the state of the aortic wall (which is why surgeons sometimes change their plans and go for more drastic operations when they open people up), but they DO show a lot about the shape which may be very relevant to dissection risk.

Specifically, if the aorta is irregular in shape or is unusually curved and/or twisted, that's not good, because it means some regions of the wall will be thinner and weaker than others. There's a whole area of research devoted to mathematical modelling of flow patterns and wall stresses, which may eventually lead to better risk estimates, though my scans haven't been run through those systems.

My own aorta is curved in a fairly normal way and evenly enlarged through most of the tubular ascending section, so likely to be quite low risk, even without doing the maths.

[Blondie12345 in reply to JulianM]

how did you get to speak with a sports cardiologist? Didnt know we had them in the uk

[JulianM in reply to Blondie12345]

I don't think we have all that many in the UK, but we certainly do have them! I was diagnosed on a study - funded by the BHF, though initially sponsored by the charity Cardiac Risk in the Young - run by a PhD student working at St George's in the team led by Professor Sanjay Sharma.

If you're interested in sports cardiology, and getting a broader perspective on exercising with heart conditions, there's a really good BHF webinar in their 'Alive and Ticking' series featuring Prof Sharma and the former Olympic athlete, Roger Black. Well worth an hour of anyone's time ...

If you look for sports cardiologists you'll find them in many of the bigger national and regional heart hospitals, primarily catering for private patients, but NHS referrals are also available. Congenital Heart Disease teams will often be faced with patients who need individual advice and support around exercise and sports participation (Roger Black being a prime example) so there's definitely a need for specialists in this area.

[Lexi72]

hi tedthedog

I would ask your cardiologist. I am 62 have a bicuspid valve and a dilated aortic root and arch about 4.6 and am asymptomatic . I will have to have a valve replacement but not quite yet. I am not allowed to lift weights or do high intensity exercise or anything which puts strain across chest eg some of the machines in the gymn. I swim, do yoga, Pilates go to the gym mainly cardio cycling and rowing and cross trainer. I am allowed to run (actively encouraged to) but cut down yet the length of my runs usually to 5km. I used to do half marathons. I walk 15000 steps a day usually. Everyone though is different so ask what is appropriate for your condition. If you can exercise is really great. Best wishes