Heartfailure, group ride and share experiences

Hi,

Almost two years ago I was diagnosed with heart failure. Before that I was a fairly fanatical athlete, with cycling as the main sport.
In the meantime I am well adjusted to medication, have received a beautiful ICD (which fortunately has not yet had to prove itself) and I have started cycling (mainly Zwift) again. I no longer focus on FTP’s but mainly try to enjoy a healthy effort. Staying fit is the main goal. Of course my competitive nature sometimes gets in the way, but all in all I’m starting to find my own new pace.
I wondered if there are more fellow sufferers on Zwift who would like to exchange experiences and knowledge about sports with heart failure. Perhaps you are also in for a group ride every now and then (out together, at home together).
My name is Kees, I am a Dutchman and I am already 58 years old.
Let me know if you are interested. Kind regards, Kees (aka Kees G4iiiiant…or I drive a Giant TCR 1 with 4iiii powercranks)

Similar to you, I’ve been a fairly serious cyclist for many years. I started riding and racing bikes when I was 15 and with a few breaks have been doing so since. I’ve been wearing a heart rate monitor for the last 15-20 years on just about all of my rides. In 2017, about six months after I turned 60, I noticed my heart rate ceiling dropping. Before this my max HR rate was 190 and when I’d start pushing, it would get uncomfortable at 160, then 155, and so on.

I went to a cardiologist after a couple of months of denial and attempted “rest”. After a series of tests with no indications of what the problem was, he sent for a CT Calcium Test. This involves getting a CT scan of your heart with the focus on plaque in the arteries and heart valves. A good score is less than 50 and they start getting concerned with anything above 500. I scored the high score for the month at 1968 in my right coronary artery alone; this equates with a 95-98% blockage! Two days later, I got a port, polish and resleeve, AKA an Angioplasty consisting of three stents in my RCA.

It should be noted that I eat well, with fiber, fruits and vegetables as the main source of nutrition. I don’t drink alcohol to excess and I get plenty of rest. Coronary disease does not feature strongly in my family; cancer and being really old are the usual method of reaching the end of regulation. So this was quite a shock for me. The doctor believes it was a genetic issue mostly because there isn’t any other explanation.

I’ve made a good recovery since then with some decline in performance but that could be attributed to getting older. My max HR is in the 180’s and I’ve been a mid-B rider on Zwift.

The big takeaway from this for all of us, is to pay attention to what your body is telling you. I was probably a ride or two away from a major coronary event before I got my procedure. The CTCTS was the best 120 bucks I’ve ever spent (insurance didn’t cover it at the time).

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Thxs Marc!
I totality agree with you: The big takeaway is to pay attention to what your body is telling you. Still I have to gain some trust in my capabilities. It will come in time. Enjoy your ride!

I’m not (yet) in heart failure, but do have some cardiac issues. Had virally-induced myocarditis about 11 years ago, when I was 40 (unknown at the time, but I was quite ill for about 2 months and had some chest pain). I was mostly a runner at that time. I resumed training far too soon, and starting noticing that I would get a sharp chest pain at certain effort levels, my heart rate monitor would stop working, and I would get massively out of breath and have to slow down. I eventually went to my family doc with my complaint and a quick ECG showed that I had a left bundle branch block (LBBB). Normally the conduction disorder known as LBBB is only seen in patients who have heart disease/damage, so I was subjected to a ton of tests including exercise stress testing and nuclear imaging. The pipes looked clean and structurally the heart looked ok, so it was assumed that the conduction disorder was linked to the viral illness I had a few months earlier. Over the next several years, I started finding that my performance was decreasing faster than I would have expected for age alone. Eventually got myself switched to a cardiologist who was an athlete and understood athletic patients. An MRI revealed that my left ventricle was dilating and my ejection fraction was diminishing. Early stage dilated cardiomyopathy, probably the result of the dyssynchrony that LBBB induces. I got on some meds and started training on the bike since my knees were not in great shape from many years of hard running. Happy to say that due to the meds and training, the dilation has (at least for now) reversed, and my ejection fraction has improved. I’ll always have the limitation to my aerobic output caused by the LBBB (I lost about 20% of my aerobic output I’d estimate), but hopefully the further deterioration is slowed or stopped.
At age 51, after lots of slow, easy training sprinkled with some high intensity, with this condition, I can still hold 188bpm for a couple of minutes, and I’m aiming to have my FTP up to 4W/kg by the spring. Quite a bit below where I would be without the condition, but I’m happy to be doing ok, and that the riding helped arrest further deterioration.

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Hi Kees
Fantastic you’re back on the bike. Such a wonderful thing.
There are a few of us zwifters with heart issues that regularly ride. I’m of a member of a FB Group called Cardiac Athletes, you maybe interested to have a look. Basically the group consists 3,500+ active people with a variety of heart related issues/complications etc who ride/run etc. We also have a zwift team established in Zwiftpower. Also, If you search ‘Cardiac Athletes’ in the Zwift Companion App, it will be a great way to connect with other ‘Hearties’. I’ve arranged meet ups in the past within zwift but as I’m in Australia my timezone kind of excludes some Northern Hemisphere riders. Zwift was fun before my heart attack and a complete blessing in my recovery from bypass surgery.
All the best.

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Thxs for sharing your experience Troy. Gives me some hope. Now that I,m on medicine I hope my ejection fraction will improve a bit, but I suppose that’s wishful thinking. We’ll see in the future. Have a lot of great rides!

Thxs Anthony, I will certainly look into the facebook and Zwift-group. connecting with other Hearties is exactly the goal of my post. Hope to meet you on Zwift although it will be night time for me :stuck_out_tongue_winking_eye:

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Glad to hear you took care of things and seem to be doing better! My story is not nearly as terrifying, but similar to others.

2 years ago (when I was 34), I was having difficulty breathing and chest pain - I attributed it to straining a rib or playing too much softball (I was in 4 leagues at the time). Rest did not help, so I finally went to the doctor. Long story short, I was diagnosed with pericarditis and myocarditis (no known cause - but I suspect viral). Emergency surgery to drain the fluid around the heart (450 mL), medicine and rest - I finally got better after a few weeks and continue to be good to this day.

A year after, I caught the cycling bug. I have always been an athlete - but not an endurance athlete. I had a road bike and trainer, but I never used it (the trainer) - only really doing a few hundred miles a year outside on local bike trails. On December 5th, 2020, I started doing indoor rides and 2 weeks later I joined Zwift and have not looked back.

My cardiologist followups are pristine (stroke and A Fib are what run in my family). RHR is down in the mid-40s consistently and all Echo cardiograms come back clean! 2 years ago, I also decided to completely stop drinking alcohol and I can not tell you how much that has helped. Additionally, with 2 kids under 3, not being hungover is definitely a plus!

I continue to wear a HR monitor and once every 6 months or so, I will have a Atrial Flutter event (during a ride) where my HR says 220 but my effort is more in the 120 range. I know when I see this to stop, get off the bike and sit down. My body self corrects and the Dr says that as long as my body self adjusts, that it is more of a quality of life issue - so no ablations needed.

Happy to see that others have taken to Zwift as a way to improve heart health and hopefully be around for a long time!!

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Thxs for sharing your story. Luckily you were diagnosed on time. My problems are probably caused by a not diagnosed virally induced myocarditis. Good to hear you are back on track again. Enjoy your rides! It’s what Mark says: pay attention to what your body is telling you.

Kees - give it time, and don’t overdo it. Use data like HR monitoring and even something like Whoop or Oura ring to help guide your workout intensity. Listen to you body as well though too, not just the gadgets.
If you feel that you’re not getting good answers to your questions about exercise, limits, recovery, etc from your current cardiologist, ask for a referral to one who deals with athletes (and/or is an athlete themselves). Having an understanding and supportive cardiologist can make a world of difference. Moderate exercise (under the appropriate conditions and circumstances) is a wonder drug in of itself when it comes to cardiology issues. I was able to raise my EF from ~45% to 57% and normalize ventricular volume through low dose ARBs and lots of exercise. But do consult/work with your doc/cardiologist along the way.
Best wishes for the future!

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Thxs Troy! I will give it time and try to train wisely. I can use the advise from fellow Hearties.
What are ARBs?

Angiotensin Receptor blockers. These are the ‘sartan’ drugs like Candesartan, Valsartan, etc. Most commonly used for blood pressure control, but they (or ACE inhibitors which affect a different part of the same biological pathway) are also usually part of the cocktail that heart failure patients receive since they modulate neurohormonal activity in the cardiovascular system. Patients will also usually receive a beta blocker too, and sometimes other medications.

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Thxs Troy! I didn’t know the abbreviation. Time will tell if my EF will improve. For now it is important that I exercise with sense and still get enough satisfaction and pleasure from it

Hi Anthony,

I have signed up for team Cardiac Athletes and my application is pending. I’m not familiar with the procedure, but is there anything I need to do to be approved to join the team?

Sincerely, Kees

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Hi Kees
Thank you for joining the Cardiac Athletes group in zwiftpower. Have approved you :grinning::+1:. Regards Anthony

Thxs Anthony! It’s a “once in a lifetime” experience to be approved by an Aussie :pray:

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Heart health is my reson for zwift have t been on a bike since I was sixteen. 51 and want to live as long as I can. I’m trying to avoid these situations. Zero to 48 in 3 years at about an hour a day 5-6 days a week. 120bpm +. Dr Dean Ornish will show you how to make positive changes. Should be required reading just so you have more knowledge

Thxs S! I don’t know Dr. Dean Ornish, but I will definitely look into it.