Whilst having a medical in 2019 to leave the RAF in 2020 it was picked up that I have a Bi-Cuspid aortic heart valve and due to that an enlarged Aortic root.

I have had lots of monitoring and ECg’s, MRI scans etc and unfortunately my Aortic root has now grown to the point I’m likely to need an operation to replace the valve and root.

I asked the surgeon today about riding and he has told me to avoid anything that raises my blood pressure or heart rate significantly. However, just before Christmas another doctor to me I was ok to exercise.

Has anyone had anything similar and carried on exercising.

I’m really stuck and depressed with it all because I’m at the point where, thanks to a member on here who I’ve been riding with, I’m really starting to enjoy my riding again.

Been told to lose weight but not going to be able to do that on diet alone.

IANAD

Don’t give up hope.

Two people I have riden with have had their Garmin set up to audibly tell them when their heart-rate goes above a threshold that they set before the ride. It only pings them on big hills and they just ‘back off a bit’. They seem happy and able to ride everywhere I can, just sometimes a bit slower when going up.

No personal experience, and not directly related, but IIRC the bLevo app for Turbo Levo bikes allows you to set a heart rate range and varies the assistance to keep you in the range. Might be something that could be an option in the future?

It might be worth seeing someone like Scott Murray at Venturi, it’s not too expensive for a consultation and might give you some clarity:

Self-pay Cardiology Packages

I’ve got an arrhythmic heartbeat that disappears when over 120 bpm, misses every 8th beat. Nothing major compared to others but I do have to keep an eye on it. If I’ve had a particularly stressful few days I have to take it easy so as not to trigger a runaway event where it races to 180bpm+ for a minute then calms down if I’m doing exercise. Day-to-day it’s never caused me an issue, it’s only a concern when out on the bike pushing hard. A gentle ride doesn’t trigger it.

Two people I have riden with have had their Garmin set up to audibly tell them when their heart-rate goes above a threshold that they set before the ride. It only pings them on big hills and they just ‘back off a bit’. They seem happy and able to ride everywhere I can, just sometimes a bit slower when going up.

I’ve got this set up too as my heart can sometimes race away for a few seconds when on a big effort, it’s set to 180bpm as that’s my all-out absolute limit normally and a runanway event hits 185-190. It hadn’t beeped in a few years until a few weeks ago as my fitness has plummeted, especially my endurance and those little efforts to get over trail obstacles. Took me a bit by surprise when it went off on the first climb at Cwmcarn and took a minute to go back down!

Best advice I can give is listen to the medical staff, even if their views differ and also listen to your own body. It will let you know if you’re causing yourself issues or not.

Get lots of opinions. A lot of doctors don’t ‘get’ the need to exercise so they toss these statements around like they don’t matter. But others do and will talk you through your options.

Took me a bit by surprise when it went off on the first climb at Cwmcarn

Doesn’t surprise me, that **** is brutal right out of the car park!

i have had heart issues for the last 10 years or so. thought it was fixed with open heart surgery,but problem has occured again.

listen to the surgeon, and not the doctor.
a heart surgeon will know more about your problem than a doctor will.

and good luck with the outcome.

I used to road ride in a group with a guy who had a similar problem with his aorta – IIRC it had ‘ballooned’ thinning the wall of the blood vessel. As others have mentioned above he used to ride with a heart rate monitor and always took it gently going up hills. Can you go back to the first surgeon to say you’ve had different advice and is there any way you can do some cycling to help reduce your weight?

Good luck getting it sorted!

As Ton says Surgeon not a GP, the clue is in the GPs title.

I’m a doctor, not your doctor. Not medical advice:

For aortas, a general theme is that you want to avoid raising your blood pressure. Sport is somewhat complex in that your BP is raised during exercise but fitness generally lowers your BP longer term.

We usually advise avoiding very strenuous exercise, particularly isometric exercise (straining). I doubt a heart rate monitor ‘limit’ would really inform much for this condition.

In your case, it’s difficult to advise without knowing specifics of aortic diameter, family history etc.

No one will be able to definitively advise you – it’s all a balance of risk but there’s certainly a risk associated with becoming sedentary if you need a big operation in year or two. Plus, according to article linked, there is some (v limited) evidence that exercise may be protective against rupture. As above, speak to someone who “gets it” about the need for exercise. Unless you were extremely high risk, it is unlikely I would advise you to cut out recreational MTB (but again, I don’t know the specifics of your case).

The guidance we would use is here. https://academic.oup.com/eurheartj/article/42/1/17/5898937?login=false

listen to the surgeon, and not the doctor.

Or don’t listen to me, I’m just a lowly physician 😉

Edit: It probably doesn’t feel like it, but discovering this at what sounds like a very treatable stage is better than the alternative. I’ve seen at least one memorable patient who had this condition diagnosed later than was ideal, by which point his heart had almost given up. It took him a long time to recover.

Cheers superficial. Appreciate that.

Some more context:

The bicuspid valve is regurgitating quite a lot and as such I’m always tired and have recently started to get a lot of swelling in my lower legs.

My ascending aorta is now at 5.2mm which is about the intervention point.

The surgeon I spoke with yesterday is the hospital’s leading heart surgeon and wouod the person carrying out the operation. It’s him that has said to not do anything that will raisey blood pressure or heart rate. So pulling and pushing or riding and running. I’ve got to try and keepy heart rate below 115 and blood pressure as low as possible.

I know it’s for the best long term but it’s still a kicker hearing that I can’t ride until I’m fully recovered.

I had a bicuspid aortic valva replaced with a prostethic valve over forty years ago (1982, age 14).

Things have moved on since the 1980s in terms of surgery and management.
It used to be that you’d be told to sit in a bathchair all day but now exercise / living a full life is encouraged post-surgery.

I ride several times a week, many hours at a time. Not at the front of the group but not off the back.

I am on warfarin and bruise readily but crashpants/ thigh protectors manage that risk.

Hang on in there – it will be worth it.
DM me if that helps.

I started with AF back in August last year, I’ve had a cardioversion and ablation procedures prior to the end of last year but being back in rhythm only lasts less than a couple of weeks and I go back into AF. I’m now on some stronger meds that have settled my HR down more and I’m having another procedure in 2 weeks which they hope will stay in with help from the meds.

Regarding exercise, I was trying to do some easy turbo work and I mean easy, I dropped my stats on Zwift so I could juts spin lightly but it still took it out of me, just sitting on the bike my HR would elevate and anything slightly strenuous would send it well over my max HR. So in early December I made the decision to stop exercise which hasn’t been easy and I’m chomping at the bit to get back on, however my surgeon has advised to wait and once I’m back in rhythm I will have to take it easy in the future. No more crazy sprinting and power workouts for me, however I will be able to ride based more on endurance he has said.

Just listen to the surgeon, plus your body will let you know if it’s a good idea or not.

Like StirlingCrispin I’ve had my aortic valve replaced (in 2014 at Bristol Heart Institute). have you joined the Somerville Foundation for Grown Ups with Congenital Heart disease (GUCH), it’s free to join https://sfhearts.org.uk/

As said above, listen to your surgeon with regards exercise, you could possibly still get out for walks etc. Do you know how long the waiting list is for your operation? Have you decided on what type of valve to have?

Feel free to PM me if there’s anything you’d like to know about having your valve replaced.

There’s also https://www.achaheart.org/your-heart/webinars/ Adults with Congenital Heart Defects (ACHD) association, which is american but has some useful webinars. Here’s one for bicuspid valve patients https://www.achaheart.org/your-heart/webinars/2020/bicuspid-aortic-valve-patients-what-are-your-options/

Have you been told about infective endocarditis??

A little bit off topic but just over 6 months ago i had a heart attack while out on the road bike. Felt like indigestion so carried on riding for another 3 hours.
The result was a triple bypass a couple of weeks later.
Speaking to the surgeon he said don’t be a heart attack victim and just sit in a chair for the rest of your life.
Two months after the op i got back on a bike but wore a heart rate monitor and had my blood pressure tested regularly.I slowly built up my distance on the road bike until i was able to join back in with the club group rides.
Due to the tablets i am on my heart rate cannot get over 135,and at this i am gasping.
This is only really a problem up hills where i have to ease off to manage the rate.It is frustrating but one year after the op the tablets which cap my heart rate and cause the breathing problem could be stopped.
The back up from the NHS has been fantastic with specialist nurses coming to my house every 2 weeks.
Looking at forums it seems that there is a wide range of different effects after heart surgery,and opinions on recovery.I think each individual is different.I started recovery believing my fitness would have disappeared but it hadn’t so it gave me a lot of encouragement for the future.

Hi Renton

Going through the same as you with bicuspid valve diagnosed last year. Have PMd you.

Andrew

@Renton just wanted to wish you all the best.
I had a bit of a heart scare last year and that was really shit. Nothing like as bad as what you are going through though ☹️

@ruddy – I am nearly 3 years the other side of the surgery for that diagnosis and may be able to answer questions you may have. Drop me a message on here if that could be helpful.

Ruddy & Renton, once you’ve had the operation, don’t forget to take the laxatives when the drugs come round, the morphine bungs you up and you don’t want to be straining when you’ve had your sternum cut open!!

Also, I was advised to have my children checked for congenital heart problems as it often runs in families, so if you do have children, might be worth getting them checked out.

Thanks jamj – pinged you a pm. Surprising how many people have been through this when you mention it. Head sorted that once it’s fixed, it’s fixed, and back to adventuring.

@natrix thanks for the invaluable advice, I’ll think of you when the flock of bats are released…

Asked cardio on kids getting checked and he mumbled something about not needed… will get a private scan once dust settled on me.

had your sternum cut open!!

i sneezed on day 4 post op. a feeling i never ever want again in my life.

@natrix provided a wealth of support and information when I was going through this. I see from above he’s still doing that! Great member of STW IMHO!

Good to catch up with you earlier @ruddy

@natrix Interesting you say about having children checked. Both of mine have got a couple of the symptoms of Marfan syndrome which is linked to the bi cuspid valve so we are definitely going to get the checked.

Thanks for that JamJ, hope you’re doing well. If anyone’s trying to decide on which type of valve to have drop me a pm and I’ll try to outline the various pros & cons.

I’ve just bought the Fourth Frontier (https://fourthfrontier.com/) heart rate monitor as it takes a continuous ECG while exercising. I’ve not yet used it so can’t comment on its usefulness.

Also, this webinar may be of interest:

https://www.eventbrite.com/e/frontier-heart-seminar-continuous-ecg-monitoring-during-sports-exercise-tickets-267420350467?ref=eios

Here’s the link to the webinar I mentioned above:

https://fourthfrontier.com/pages/frontier-heart-seminar?utm_source=klaviyo&utm_medium=email&utm_campaign=fhs-recording

I found it very interesting. It pushes the Fourth Frontier heart monitor but is still helpful

just a quick thread resurrection.
i hope all you blokes have problems with your heart, are getting sorted.
still in perm AF here, but i go back in on thursday for another procedure.
not building my hopes to much but you never know, so fingers crossed.

Best wishes for that Ton.

I have a pacemaker fitted due to pauses in my heartbeat, but I also had Atrial Fibrillation so end up having an AV Node oblation which makes me total pacemaker dependent for a heart rate
I still get out and ride, although I have gone to an ebike now. The main issue is getting the pacemaker to increase my heart rate as the demand increases because the giro is designed for runners and doesn’t always kick in when I’m riding. So if I’m doing a big climb and I’m stuck at 70bmp I struggle and that’s where the ebike helps
It’s always good to be a bit fitter and getting out in the hills helps me both physically and mentally with that

Good luck Ton, hope it goes well.

I’m a pretty modest cyclist by the standards of most folk on here, but it’s a major part of my life and essential for my physical and mental health.

I’m a 3 heart attack survivor with heart damage and a gut full of beta blockers (and a bike that’s way too heavy). I’ve managed a good year without incident, so hopefully things are on the up heart-wise!

Best wishes @ton
(and anyone else with heart issues)

After sitting on it for 6 months I have booked myself in for an ablation to deal with my exercise induced premature ventricular contractions. This is after a bout of really bad ones (feeling like my heart was going to burst out of my chest, felt a bit feint, pale and nauseous also) maybe a month ago. Its since settled, but it was bad enough at the time to make me think the risk is worth if for what the cardiologists say is a benign condition.

More worryingly though, I have been getting some flutters during the night in bed on and off over the past couple of weeks which is not something that’s happened before. Also I got a bit of a run of it last night while watching the tele (knackered after a couple of days’ riding).
I’m fairly sure whatever problem I’ve got is progressing towards Atrial Fibrillation or Atrial Flutter 🙁

Seeing cardiologist tomorrow about that.

Hi all.

Hope you are all doing as well as you can.

I’ve seen my surgeon last month and he has provisionally booked me in for my open heart surgery at the end of May. It came as a bit of a shock as I was expecting a 4-6 month wait but after all is said and done it’s better to get it sorted.

After being told initially I had to stop exercise the surgeon has had a rethink and has now said I can ride my bike but try and keep my heart rate down.

Did my first ride today after a couple of months off the bike and it was absolutely amazing. 23 miles but nice and flat so steady away.

@ton good luck with your procedure mate.

Best of luck Ton.

Good luck to Ton, Renton and all the others.

Did anybody see the recent news article about a wireless patch that can monitor the heart for a month, has been trialled by the NHS and may replace the old holter trace kit.

Good to hear that you’re back to gentle exercise Renton, imho it does help with heart issues, even if it just reduces stress.

@Renton –
That’s fantastic news.
Good luck to you – and to everyone else lined up to join the Zip Club.

I have had several TIA’s and a stroke since having my valve replaced with a mechanical one. Despite my very disciplined approach to taking my meds – my INR isn’t that stable and that’s part of the cause. If I had the choice again I would have an animal valve or one of my own valves from the femoral artery.

My agreement to the surgeons preference for a mechanical valve is one of my biggest regrets.

I have had several TIA’s and a stroke since having my valve replaced with a mechanical one. Despite my very disciplined approach to taking my meds – my INR isn’t that stable and that’s part of the cause. If I had the choice again I would have an animal valve or one of my own valves from the femoral artery.

My agreement to the surgeons preference for a mechanical valve is one of my biggest regrets.

@jamj1974 Not what I wanted to hear !!!

A few questions….

What mechanical valve do you have
Do you do your own INR monitoring
How has the mechanical valve caused your TIA/Strokes