Anyone riding with heart issues on here?

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:

https://www.venturicardiology.com/self-pay-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 ****er 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

Sorry to hear about your problems JamJ, have you had any support in trying to manage your INR? I've found that alcohol intake and diet can have an effect, so they need managing to some extent. Antibiotics, illnesses and exercise can all effect it to varying degrees in different folk.

The INR clinic I attend is always busiest after christmas when folk have eaten and drunk too much sending their INR haywire.............

I was once at A&E on Xmas day because I was worried about my INR.

(Get there before 9am on Xmas day and your backside doesn't even touch a seat before being seen. Turns out I was OK but got a cup of tea, a sandwich and watched the staff opening their Secret Santa gifts before heading home at 11am. Boxing Day had 6 hour queues).

I would strongly recommend thigh protectors and knee pads at all times though - a week in hospital being monitored for compartment syndrome after a thigh bleed is no fun.

previous to 2014 when i was in perm af before, i had to got the the warfarin clinic every friday, for my INR doing. 4 years i was going.

in october last year when i reverted to af, i was given the option of a new blood thinner. a drug called Apixaban. when taking it, you do not have to go for your blood doing at all.
the downside is, that there is not clotting agent for it. so if you cut or cause a bleed to yourself it needs sorting asap.

How has the mechanical valve caused your TIA/Strokes

Because I wouldn’t need the blood thinners with a biological valve.

Sorry to hear about your problems JamJ, have you had any support in trying to manage your INR? I’ve found that alcohol intake and diet can have an effect, so they need managing to some extent. Antibiotics, illnesses and exercise can all effect it to varying degrees in different folk

I hear you Natrix, but I don’t drink since my surgery. My diet is also very structured as I eat the same level of green vegetables consistently and strictly avoid other foods that can affect it. I exercise consistently too and increase checks when in antibiotics or am generally unwell.

How has the mechanical valve caused your TIA/Strokes

Because I wouldn’t need the blood thinners with a biological valve.

Sorry to hear this @jamj1974

I was just trying to get some context on how long you've had your valve for and how the INR testing has gone. I've read some people or fine but other struggle to get consistent readings and that levels are all over the place.

I've opted for a mechanical valve which the surgeon said was the right thing to do due to my age. I really don't fancy more than one OHS either.

Had a letter through yesterday for a CAT scan, I think they are going to pump a dye into my veins and look for any other issues before pre op.

Sounds to me as if you're doing all you can to control your INR Jamj, maybe a specialist could shed some light on it? Although I guess you've tried the usual channels.........

Because I wouldn’t need the blood thinners with a biological valve

Expanding on this, I'm assuming that the theory is that there's a greater risk of blood clots forming on a mechanical valve, hence the need for warfarin, but if the blood clotting levels aren't controlled (INR variable), then the clots form and lead to a TIA or a stroke. (I guess there are other factors, such as cholesterol that can cause strokes, I don't know if they can pinpint where the clots come from.)

My cholesterol is low and my blood vessel’s impressively clear. There is no narrowing and plaque. As someone who has suffered a stroke they proactively put me on a statin anyway.

My wife’s side of the family have a genetic disorder that has led to most of them having this condition and to be blunt, it has killed 80% of them (aunts, uncles, grandparents etc before anyone properly cottoned on and now my wife, bother, sister, my boy, my SiLs daughter etc are all scanned regularly to monitor any enlargement of the aorta.

My MiL was spotted in time and had surgery and made a full recovery no problems though.

Given that if your aorta does go you’re ****ed I’d err on the side of caution…

i am fortunate enough to be able to add a little bit of joy to the sadness of this thread. just got home from LGI Jubilee wing.
rest heart rate of 62bpm now. with a perfect BP for a 55 year old man and my heart is now back in sinus rhythm. so fingers crossed for a good future.
the NHS are bloody amazing.

good luck for the future renton, and all you other blokes with heart issues.
i wish you all a good outcome.

Great news ton.

My very best wishes to all on this thread. It's scary to have a heart issue. I'm a member of the Zip Club too (love that!). For me it was a congenital plumbing issue – some abnormal cardiac geography! – which didn't become apparent until I was in my late 30s. I think my first question to the surgeon was: will I still be able to ride my bike? The answer for me was yes, and I've been very grateful for that. Yes, a massive thumbs up for the NHS.

That's great news Ton.

It's 9 years ago this week that Kevin last had any AF issues. The life style changes he made then and kept to have worked for him. We still keep fingers crossed that he won't need any of the procedures he was offered at the time and assume that the success rate must be getting better as each year goes by.

He uses the Turbo Levo more than his Stumpy now but still hitting the trails as hard, fast and often. If he had listened to the Consultant then he would have had to pack in MTBing forever.

Only tablets he is on now are Statins.

👍glad to hear that @ton

Thanks for the kind wishes all.

Not wishing to prompt any hoarding/panic prescribing of meds, but Channel 4 news last night had a report on medication shortages (most noticeable with HRT) and mentioned a UK shortage of warfarin. I always have a buffer of a months worth before restocking, not the sort of meds you'd want to be going without...........

good luck for the future renton, and all you other blokes with heart issues.
i wish you all a good outcome.

Thats excellent news Ton.

Thanks for the kind words too, I will keep everyone updated on progress etc. Currently booked in for a CAT scan on Thursday where they are going to inject some dye into my veins to look for any other issues.

Just had some letters in the post!!

Pre Op assessment : 26th May.

Operation : 23rd June.

"Shit" as they say is getting real !!

Just seen your post @Ton that is great news! Glad it all went well.
I'm about 10 months into my AF journey, 7 months in permanent AF, the last 3 in normal rhythm due to an ablation and the strong Amiodarone meds I'm currently on. At the end of next month the meds should stop and then we will see what happens, will I stick or twist??!

Last couple of months have been great to exercise again, mostly on the turbo but the strength is returning and the HR is staying low. I love being back on the bike.

Fingers crossed for you all, all the best Renton on the upcoming Op! Take care!

How are you doing @ton? Hope all continues to be well. Also for the rest of you!

@gray

i am doing very well mate. 2 weeks in synus now, fingers crossed it shall carry on.

hope everyone else is going well and i hope you all get sorted.
it is pretty horrible when you are a active person, who is then stopped from being so by illness.

That's ace, well done!

Good news ton.
Renton
Hope it all goes well.
Having been forced off the bike for a long period of time I really feel for anyone in the same situation.

Great news Ton. Best of luck Renton. Keep us updated!

Good luck to all you guys dealing with heart conditions.
As someone who's wife has been through all this and more, I'd just like to give a shout out to all your partners, family and friends.

how quickly things can change, mostly for the worse.
i reverted back into AF yesterday morning. in a bad way.
heart rate of 150 bpm, quickly followed by a drop to 40 bpm where it stayed until 3am this morning.
spent the day and night in LGI ccu.
just got home, with the news that i may now have to live with AF. i have had too much work done in the past to try any ablations, and a cardioversion seems a bit pointless as my heart will revert.
possibly node ablation with a pacemaker fitted, but i am a bit too young for this.
so we will see.
back to 10mph rides eh.......... ;o)

i am a bit too young for this

Who are you trying to fool?

Thread update:

Well, my operation date of 23rd June was cancelled due to a couple of emergencies which is to be expected.

I then had to go and see the surgeon as my breathlessness is getting worse and I am also getting more swelling on my legs despite being on water tablets. Currently I feel constantly tired and recovery from exercise is taking a lot longer.

Anyway I'm due to go into hospital on Wednesday with a view to doing the surgery on Thursday. About 3-4 months off the bike follows that and then I can start doing some light riding. Hoping to be able to throw my bike around properly by the end of the year. This is providing surgery and recovery goes well.

I'll keep you all updated.

Cheers

Good luck, hope the procedure goes smoothly and you bounce back quickly.

good luck with it all pal. soon be back on the bike.
i have just got in from a 10mph ride with the wife and eldest.
ride slow, ride far.

good luck.

Hi all. Update time.

Surgery went as expected on Thursday and lasted about 6 hours. I had a metallic aortic valve and ascending aortic root replacement. Both bits went fine.

Currently feeling like Ive been hit by a bus or two which is to be expected.

Unfortunately I'm still in critical care as my heart has now decided not to talk to itself which means I have no regular heart rhythm. They are currently exploring the option of a permanent pacemaker which is fine.

Hospital and all nurses and doctors have been absolutely amazing.

Feeling quite emotional today on day four after the op.

Hope you have a good recovery. Don't underestimate the emotional toll of the lead up to it and the surgery, so take it easy on yourself.

Heal up soon. If you do end up needing a pacemaker, it should be a piece of cake compared to the major major re-plumbing you've just had done!

Fingers crossed for you Renton, I hope the rhythm sorts itself out and you get as near to normal as you can.

I missed the update from @Ton, sorry to hear that mate, bloody AF is a real pain and so restrictive with the exercise. Have they mentioned any other meds you could try?
I'm 2 months off the Amiodarone and all going well currently, back to biking pretty normally but still building back up, a week of covid didn't help. The Amiodarone stays in my system for 3 months so I should know the outcome after August.
Wishing you all the best with the various issues!

I am riding with "basstorinic" and "nixie" but I think "heart issues" has left the forum in a flounce

Hi renton – hope you're recovering well, and hope you get your rhythm issues sorted. As longdog said ... I found the emotional recovery far more of an issue than the physical recovery after heart surgery. Wishing you well.

Good luck Renton.
Do you clank like what I do ?
(Mine has quietened over the last 40 years, I think. That or I've got used to it.)

Surgery went as expected on Thursday and lasted about 6 hours. I had a metallic aortic valve and ascending aortic root replacement. Both bits went fine.

Serious plumbing!

Best of luck with the recovery. Have a friend with a replacement valve, hasn't stopped him being disgustingly fit - represented the UK in cycling at Masters world champs.

Hi all,

Further update time ..... Managed to somehow pick up an infection and have felt extremely poorly over the last two days. Even managed to upset the wife last night and have no recollection of it?

As it stands my heart is repaired but is now no longer communicatijg between the different parts. This in turn means i am going to need a pacemaker over the next couple of days once I've got rid of the infection I have.

All a bit emotional really.

Hi Renton, glad to hear that the surgery went OK, hope the infection clears up and the pacemaker sorts out the rhythm issues. Have you got used to the noises yet (thump, thump, click, click) ??

I have been riding weekly and more with my son - until his a broken wrist injury got in his way.

I have had a massive headache for a week - a migraine not a headache, with headache huge balance and nausea issues.