trials and tribulations

mschwett

Well-Known Member
Region
USA
trigger warning, this is a personal post and while ebikes are central, it's not really about ebikes.

i was always a pretty athletic person; i swam competitively as a child and young adult, ran track, and did long distance running in my early 30s for fun. while i rode bikes for convenience i never was a cyclist.

in my early 30s i was diagnosed with a fairly rare heart rhythm condition, typically genetic, which often manifests as young athletes dropping dead from sudden cardiac death. the condition, for those who are genetically predisposed, is actually progressed or caused by extreme exercise. so, doctors orders - no more extreme cardio. i struggled through two years of medication, procedures, surgeries, complications, mishaps, including months of hospitalization, two open heart surgeries, multiple defibrillation shocks, and much more. the idea of running or cycling was far from my mind. i also had a 1 year old at the time.

eventually, we figured things out, my condition stabilized and there was a long period of relative calm. the occasional glitch, but generally a normal life. a second daughter arrived. there is quite a bit of medical debate about "how much" exercise is too much for my condition (especially considering that i do NOT have the most common genetic mutations associated with it) and so, several years ago, looking for something healthy and fun and also useful, i got an ebike. i started with a front hub commuter, and really enjoyed riding it. within a month or two i purchased a specialized turbo creo, a mid-drive carbon road bike, and began riding it... a lot. i kept my heart rate at around 100bpm average, with perhaps 95% of the time between 80 and 110bpm. i did short rides, i rode it to work, i rode it up mountains, i did 100 mile plus rides, i did gravel rides and road rides. i rode it more and more with the motor turned off, realizing that it was - frankly - more fun to do the work myself, while keeping my heart rate in those parameters. i upgraded the bike extensively. carbon wheels, cranks, titanium speedplay pedals, one piece carbon cockpit, rear cassette, tubeless tires of course, etc etc.

so then i realized, why ride a relatively heavy (around 28lb at this point) ebike with the motor turned off? why not just ride a really light regular bike! so i got an "acoustic" road bike, a specialized s-works aethos. 12 speed dura ace di2 electronic shifting, the almost-lightest of everything, dual sided power meter, etc etc. it rides like a dream, a truly incredible machine. i kept riding at around the same pace, 500-600 miles a month, the same rides, 3 to 5 a week, i rode it to work and on rides from work, long weekend rides, all over the city and surrounding hills, mountains, coastal roads, forests, valleys, MUPs, etc. it rode most all the transit systems in the area, boats, trains, buses. loved it. kept my heart rate in that same range.

3 months ago i felt the familiar flurry of a cardiac arrythmia while riding. no big deal, i hadn't taken my meds for the morning and was stressed out. i rolled to the side of the road, got off the bike. sat down. unfortunately the rhythm persisted, and after a short period i lost consciousness and was shocked back to a normal rhythm. an unpleasant experience, waking up face down in the dirt with many fellow cyclists and joggers stopped to help me out. i took it easy for a while, talked to my doc, increased my meds. but now i noted that every couple rides i'd feel a little blip here or there. lowered my exertion quite a bit, now with all of the ride in the 70-100bpm range. only let it over 100 very rarely. adjusted medications further. two weeks ago this friday i was on a very mellow lunchtime ride. felt the now familiar feeling. stopped. this time, it did not go away. my implanted device tried to break the rhythm, without success. took the bike home in an uber, feeling very unwell. anxious about getting shocked. an hour or so later, sent my doctors a remote transmission, after which they immediately called and said "go to the ER right now, do not drive yourself."

so, the usual excitement of the ER, arriving with ventricular tachycardia and the subsequent flurry of activity, but just before they got to do anything exciting the rhythm broke and i was back to normal, if exhausted. however, the doctors were concerned enough to trigger two procedures/surgeries in the following days, more medication changes, and a number of discussions about the cause of the progression and what is now, somewhat confusingly given my ability to do a very large amount of cardiovascular work, not just a rhythm problem but actually the early phases of heart failure. the two possible outcomes at this point are 1) it stops getting worse, meds and recent procedures help, and another long period of stability ensues. 2) heart transplant. the doctors are frankly divided on this, it's an unusual situation, and there really aren't many precedents. the doctors also continue to be divided on how much exercise is too much, ranging from "absolutely nothing other than walking to get somewhere" to "as long as you can have a conversation and aren't out of breath it's ok." at this point, of course, it's entirely possible the latter approach, and all the joyous, satisfying, wonderful cycling, created this new re-emergence of the problem as well as the heart failure symptoms.

so i have some hard choices. i have two kids. i can live without cycling. or, i can try to find a new happy medium, perhaps going back to riding with the motor actually turned on, and keeping my own input to the ride even lower still. for years i was sustaining around 200 watts of human power for 1-5 hours. lately i had been keeping it to 160. perhaps 120 would be below the threshold, and i could simply use the bike to make up the difference, doing the same rides at the same speed. better than nothing, but, the risk is not insignificant, and it's certainly less satisfying than what i've been doing. the third option is to throw caution to the wind, if it gets worse, it gets worse, i get a heart transplant, which completely cures the disease in question but of course brings with it numerous other risks and complications. if i was a single man, that's probably what i would do, to be honest. but i'm not.

on the bike front, i'll sell the aethos, sell the creo, and get a true electric road bike. the temptation of riding the aethos is too great and the creo is a great hybrid of a gravel and road bike, but i want a road bike. if i ride at all, other than to and from work and with my daughter on the back for errands and outings.
 
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So sorry to hear this. Tough choices is right! Hope you can find a way to continue cycling.

Unfortunately, will be hard to know what's really a safe level given the rarity if your heart condition. Wondering if a serious sports medicine clinic could help you with that? The cost would surely be out-of-pocket.
 
So sorry to hear this. Tough choices is right! Hope you can find a way to continue cycling.

Unfortunately, will be hard to know what's really a safe level given the rarity if your heart condition. Wondering if a serious sports medicine clinic could help you with that? The cost would surely be out-of-pocket.

i don’t think the mechanism is all that well understood, definitely not a sports medicine kind of thing. one doc suggested that putting a catheter in the heart while exercising to track pressures in the different chambers at various heart rates and levels of exertion might indicate something, but definitely not a “standard” test and fairly self indulgent … although the doctors are always interested in my case because it’s been an unusual course.
 
i don’t think the mechanism is all that well understood, definitely not a sports medicine kind of thing. one doc suggested that putting a catheter in the heart while exercising to track pressures in the different chambers at various heart rates and levels of exertion might indicate something, but definitely not a “standard” test and fairly self indulgent … although the doctors are always interested in my case because it’s been an unusual course.
Was thinking of the sports medicine clinic more as a testing resource in conjunction with your cardiologist. Kind of like that catheter procedure.

In medical matters, the last thing you want to be is interesting.
 
i don’t think the mechanism is all that well understood, definitely not a sports medicine kind of thing. one doc suggested that putting a catheter in the heart while exercising to track pressures in the different chambers at various heart rates and levels of exertion might indicate something, but definitely not a “standard” test and fairly self indulgent … although the doctors are always interested in my case because it’s been an unusual course.

It doesn't hurtto talk to them about potential complications of the cath and what they are hoping to gain +/- how it'll help with their choices. It might help you balance the risk vs the potential to return to relative calm - especially if they find something unexpected and it opens up therapeutic options they're not considering. With any luck, you'd have a cardiologist + anesthetist / icu physician there for the procedure and might get some new insights?

My own experience is minor compared to yours, but I was flicking in and out of AF whilst riding and slipping into HFPEF . We made an incidental finding of iron deficiency whilst working up the lethargy, and following an iron infusion everything settled down! I had a week or so of symptoms that were likely low phosphate from the iron infusion, and suspect my underlying cause for the AF was under treated deficiency in vit d + phos causing mg 2 depletion and then AF . I doubt any of that would have been considered by a cardiologist / respiratory physician OR a renal physician. Perhaps an ICU specialist or general physician? Either way, the incidental finding of iron def has hopefully delayed me going on meds that would have ended my mtb riding.
 
Terribly sorry to hear this @mschwett

I have 0 wisdom to share, just thinking that because you have a family, make decisions best for all of you (which I am certain you are doing anyway). Family first, last, always.

Sincerely hope you and your medical team can find a solution which enables you to live a long, fulfilling, healthy life!
 
It doesn't hurtto talk to them about potential complications of the cath and what they are hoping to gain +/- how it'll help with their choices. It might help you balance the risk vs the potential to return to relative calm - especially if they find something unexpected and it opens up therapeutic options they're not considering. With any luck, you'd have a cardiologist + anesthetist / icu physician there for the procedure and might get some new insights?

My own experience is minor compared to yours, but I was flicking in and out of AF whilst riding and slipping into HFPEF . We made an incidental finding of iron deficiency whilst working up the lethargy, and following an iron infusion everything settled down! I had a week or so of symptoms that were likely low phosphate from the iron infusion, and suspect my underlying cause for the AF was under treated deficiency in vit d + phos causing mg 2 depletion and then AF . I doubt any of that would have been considered by a cardiologist / respiratory physician OR a renal physician. Perhaps an ICU specialist or general physician? Either way, the incidental finding of iron def has hopefully delayed me going on meds that would have ended my mtb riding.
that’s pretty interesting, and thank you for sharing! heart rhythm is definitely affected by things like that, i personally find if i don’t take a pretty large dose of calcium and magnesium my rhythm gets a little less regular. interestingly i’m also usually technically anemic, although my ferritin is fine so it’s not really an iron thing - but i may try some iron and have also been looking at a few other vitamin issues.

at this level, these doctors are VERY specialized, and it’s interesting how hard it is to get them to talk to each other! modern medicine is both incredible and frustrating.
 
trigger warning, this is a personal post and while ebikes are central, it's not really about ebikes.

i was always a pretty athletic person; i swam competitively as a child and young adult, ran track, and did long distance running in my early 30s for fun. while i rode bikes for convenience i never was a cyclist.

in my early 30s i was diagnosed with a fairly rare heart rhythm condition, typically genetic, which often manifests as young athletes dropping dead from sudden cardiac death. the condition, for those who are genetically predisposed, is actually progressed or caused by extreme exercise. so, doctors orders - no more extreme cardio. i struggled through two years of medication, procedures, surgeries, complications, mishaps, including months of hospitalization, two open heart surgeries, multiple defibrillation shocks, and much more. the idea of running or cycling was far from my mind. i also had a 1 year old at the time.

eventually, we figured things out, my condition stabilized and there was a long period of relative calm. the occasional glitch, but generally a normal life. a second daughter arrived. there is quite a bit of medical debate about "how much" exercise is too much for my condition (especially considering that i do NOT have the most common genetic mutations associated with it) and so, several years ago, looking for something healthy and fun and also useful, i got an ebike. i started with a front hub commuter, and really enjoyed riding it. within a month or two i purchased a specialized turbo creo, a mid-drive carbon road bike, and began riding it... a lot. i kept my heart rate at around 100bpm average, with perhaps 95% of the time between 80 and 110bpm. i did short rides, i rode it to work, i rode it up mountains, i did 100 mile plus rides, i did gravel rides and road rides. i rode it more and more with the motor turned off, realizing that it was - frankly - more fun to do the work myself, while keeping my heart rate in those parameters. i upgraded the bike extensively. carbon wheels, cranks, titanium speedplay pedals, one piece carbon cockpit, rear cassette, tubeless tires of course, etc etc.

so then i realized, why ride a relatively heavy (around 28lb at this point) ebike with the motor turned off? why not just ride a really light regular bike! so i got an "acoustic" road bike, a specialized s-works aethos. 12 speed dura ace di2 electronic shifting, the almost-lightest of everything, dual sided power meter, etc etc. it rides like a dream, a truly incredible machine. i kept riding at around the same pace, 500-600 miles a month, the same rides, 3 to 5 a week, i rode it to work and on rides from work, long weekend rides, all over the city and surrounding hills, mountains, coastal roads, forests, valleys, MUPs, etc. it rode most all the transit systems in the area, boats, trains, buses. loved it. kept my heart rate in that same range.

3 months ago i felt the familiar flurry of a cardiac arrythmia while riding. no big deal, i hadn't taken my meds for the morning and was stressed out. i rolled to the side of the road, got off the bike. sat down. unfortunately the rhythm persisted, and after a short period i lost consciousness and was shocked back to a normal rhythm. an unpleasant experience, waking up face down in the dirt with many fellow cyclists and joggers stopped to help me out. i took it easy for a while, talked to my doc, increased my meds. but now i noted that every couple rides i'd feel a little blip here or there. lowered my exertion quite a bit, now with all of the ride in the 70-100bpm range. only let it over 100 very rarely. adjusted medications further. two weeks ago this friday i was on a very mellow lunchtime ride. felt the now familiar feeling. stopped. this time, it did not go away. my implanted device tried to break the rhythm, without success. took the bike home in an uber, feeling very unwell. anxious about getting shocked. an hour or so later, sent my doctors a remote transmission, after which they immediately called and said "go to the ER right now, do not drive yourself."

so, the usual excitement of the ER, arriving with ventricular tachycardia and the subsequent flurry of activity, but just before they got to do anything exciting the rhythm broke and i was back to normal, if exhausted. however, the doctors were concerned enough to trigger two procedures/surgeries in the following days, more medication changes, and a number of discussions about the cause of the progression and what is now, somewhat confusingly given my ability to do a very large amount of cardiovascular work, not just a rhythm problem but actually the early phases of heart failure. the two possible outcomes at this point are 1) it stops getting worse, meds and recent procedures help, and another long period of stability ensues. 2) heart transplant. the doctors are frankly divided on this, it's an unusual situation, and there really aren't many precedents. the doctors also continue to be divided on how much exercise is too much, ranging from "absolutely nothing other than walking to get somewhere" to "as long as you can have a conversation and aren't out of breath it's ok." at this point, of course, it's entirely possible the latter approach, and all the joyous, satisfying, wonderful cycling, created this new re-emergence of the problem as well as the heart failure symptoms.

so i have some hard choices. i have two kids. i can live without cycling. or, i can try to find a new happy medium, perhaps going back to riding with the motor actually turned on, and keeping my own input to the ride even lower still. for years i was sustaining around 200 watts of human power for 1-5 hours. lately i had been keeping it to 160. perhaps 120 would be below the threshold, and i could simply use the bike to make up the difference, doing the same rides at the same speed. better than nothing, but, the risk is not insignificant, and it's certainly less satisfying than what i've been doing. the third option is to throw caution to the wind, if it gets worse, it gets worse, i get a heart transplant, which completely cures the disease in question but of course brings with it numerous other risks and complications. if i was a single man, that's probably what i would do, to be honest. but i'm not.

on the bike front, i'll sell the aethos, sell the creo, and get a true electric road bike. the temptation of riding the aethos is too great and the creo is a great hybrid of a gravel and road bike, but i want a road bike. if i ride at all, other than to and from work and with my daughter on the back for errands and outings.
Sorry to hear of you bad health. I was diagnosed with Afib about 3 years ago after getting tired after starting a walk and then while in the ER they discovered Heart Failure (Cardiomyopathy) My ejection fraction (how well my heart pumped) got down to high teens and I felt terrible. Now with about 6 meds (no surgeries) my EF is up to 50% (55% is max) and I feel great. I ride my bike every day and try and go to the gym every day as well. I was pretty bummed when I first read the diagnosis, but now after 3 + years, I live with it and play golf, ride bikes, and can walk a mile or so if needed. Thank you Xarelto, Entresto, Coreg and the boys!! Oh, yeah, and I"m 1 month into Keto and have lost 5 lbs. Hopefully the meds will work for you...
 
Well sorry about the afib or whatevery your genetic condition is called.
My wife's brother swam regularly off a pacific beach, drowned there age 28. Not a surfer or diver, just a swimmer. Big mystery, he appeared to be in perfect health.
Forty years later my wife's other brother age 58 collapsed on the assembly line at an auto plant. Wheeled to the nurse, he was experiencing atrial fibulation. Great place to have an episode. It is obvious to the next guy down the line in 30 seconds that a worker has collapsed. Mystery solved. He has had procedures to kill certain cells prone to false rhythms and continues to work on the assembly line, until he reaches age 62 and can retire.
While the benefits of aerobic exercise are well known, including keeping my cholesterol weight and rest pulse under control, it does not do anything to prevent afib. While I love biking, I would recommend another hobby where you never exercise alone and never far from medical help. Aerobic dance, zoomba, even polka dancing as my 92 year old friend in Kansas did until her partner was killed in a car wreck. Mall walking with a club or group. Walking 3 mph gets my pulse up to 140 at age 73 but may not be strenuous enough for a younger person. Less supervision, weight & cardio reps in a gym. More dangerous, lap swimming with a life guard. My friend that died at age 99 swam laps at the Y 3 times a week until falls put him in a rest home.
Sorry about losing the beauty of the outdoors and the independence of different scenery, but reducing risk on an unsupervised attack is important to a continued life for those with heart rhythm problems.
Best of fortune in achieving your goals.
 
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Sorry to hear of you bad health. I was diagnosed with Afib about 3 years ago after getting tired after starting a walk and then while in the ER they discovered Heart Failure (Cardiomyopathy) My ejection fraction (how well my heart pumped) got down to high teens and I felt terrible. Now with about 6 meds (no surgeries) my EF is up to 50% (55% is max) and I feel great. I ride my bike every day and try and go to the gym every day as well. I was pretty bummed when I first read the diagnosis, but now after 3 + years, I live with it and play golf, ride bikes, and can walk a mile or so if needed. Thank you Xarelto, Entresto, Coreg and the boys!! Oh, yeah, and I"m 1 month into Keto and have lost 5 lbs. Hopefully the meds will work for you...

awesome! that’s great.

i’ve never had any atrial arrythmia, it’s always ventricular tachycardia. @indianajo’s story of his 28 year old relative who mysteriously died is pretty common for VT, which can be less persistent than afib and doesn’t cause stroke but is much more dangerous in the short term.
 
that’s pretty interesting, and thank you for sharing! heart rhythm is definitely affected by things like that, i personally find if i don’t take a pretty large dose of calcium and magnesium my rhythm gets a little less regular. interestingly i’m also usually technically anemic, although my ferritin is fine so it’s not really an iron thing - but i may try some iron and have also been looking at a few other vitamin issues.

at this level, these doctors are VERY specialized, and it’s interesting how hard it is to get them to talk to each other! modern medicine is both incredible and frustrating.

There's a complex regulation between ca/ mg/ phos +/- to a lesser extent na/k , most cardiologists focus on the k and mg because they area easiest to push up / stabilize and also most likely to be stuffed up by common meds ( eg indigestion tables reduce mg absorption / fluid tabs effect k ) . Back in med school , the basic physiology of how this happens +/- how if contributes to muscle and nerve function was taught , but it was a brief moment of even more confusion in an already bewildering flood of information. I'm not sure it's still covered, because it seems the only specialists with a reasonable grasp are kidney and hormone specialists. My interest comes from being a lifelong asthmatic, and because my stupid lungs struggle to correct my blood acid balance, my kidneys work overtime.

As for the iron / ferritin and your red cell count - be careful not to rely on ferritin as a measure of iron def - it can go up for many reasons ( alcohol , metabolic eg diabetes / high chol, liver disease, even inflammation / infection) . If your iron itself is low +/- ferritin saturation down and your red cells are small ( low mcv) , you may want to ignore the ferritin.
 
Sorry to hear the tough report. Let's hope that modern medicine will find a way. In the meantime take care.
 
trigger warning, this is a personal post and while ebikes are central, it's not really about ebikes.

i was always a pretty athletic person; i swam competitively as a child and young adult, ran track, and did long distance running in my early 30s for fun. while i rode bikes for convenience i never was a cyclist.

in my early 30s i was diagnosed with a fairly rare heart rhythm condition, typically genetic, which often manifests as young athletes dropping dead from sudden cardiac death. the condition, for those who are genetically predisposed, is actually progressed or caused by extreme exercise. so, doctors orders - no more extreme cardio. i struggled through two years of medication, procedures, surgeries, complications, mishaps, including months of hospitalization, two open heart surgeries, multiple defibrillation shocks, and much more. the idea of running or cycling was far from my mind. i also had a 1 year old at the time.

eventually, we figured things out, my condition stabilized and there was a long period of relative calm. the occasional glitch, but generally a normal life. a second daughter arrived. there is quite a bit of medical debate about "how much" exercise is too much for my condition (especially considering that i do NOT have the most common genetic mutations associated with it) and so, several years ago, looking for something healthy and fun and also useful, i got an ebike. i started with a front hub commuter, and really enjoyed riding it. within a month or two i purchased a specialized turbo creo, a mid-drive carbon road bike, and began riding it... a lot. i kept my heart rate at around 100bpm average, with perhaps 95% of the time between 80 and 110bpm. i did short rides, i rode it to work, i rode it up mountains, i did 100 mile plus rides, i did gravel rides and road rides. i rode it more and more with the motor turned off, realizing that it was - frankly - more fun to do the work myself, while keeping my heart rate in those parameters. i upgraded the bike extensively. carbon wheels, cranks, titanium speedplay pedals, one piece carbon cockpit, rear cassette, tubeless tires of course, etc etc.

so then i realized, why ride a relatively heavy (around 28lb at this point) ebike with the motor turned off? why not just ride a really light regular bike! so i got an "acoustic" road bike, a specialized s-works aethos. 12 speed dura ace di2 electronic shifting, the almost-lightest of everything, dual sided power meter, etc etc. it rides like a dream, a truly incredible machine. i kept riding at around the same pace, 500-600 miles a month, the same rides, 3 to 5 a week, i rode it to work and on rides from work, long weekend rides, all over the city and surrounding hills, mountains, coastal roads, forests, valleys, MUPs, etc. it rode most all the transit systems in the area, boats, trains, buses. loved it. kept my heart rate in that same range.

3 months ago i felt the familiar flurry of a cardiac arrythmia while riding. no big deal, i hadn't taken my meds for the morning and was stressed out. i rolled to the side of the road, got off the bike. sat down. unfortunately the rhythm persisted, and after a short period i lost consciousness and was shocked back to a normal rhythm. an unpleasant experience, waking up face down in the dirt with many fellow cyclists and joggers stopped to help me out. i took it easy for a while, talked to my doc, increased my meds. but now i noted that every couple rides i'd feel a little blip here or there. lowered my exertion quite a bit, now with all of the ride in the 70-100bpm range. only let it over 100 very rarely. adjusted medications further. two weeks ago this friday i was on a very mellow lunchtime ride. felt the now familiar feeling. stopped. this time, it did not go away. my implanted device tried to break the rhythm, without success. took the bike home in an uber, feeling very unwell. anxious about getting shocked. an hour or so later, sent my doctors a remote transmission, after which they immediately called and said "go to the ER right now, do not drive yourself."

so, the usual excitement of the ER, arriving with ventricular tachycardia and the subsequent flurry of activity, but just before they got to do anything exciting the rhythm broke and i was back to normal, if exhausted. however, the doctors were concerned enough to trigger two procedures/surgeries in the following days, more medication changes, and a number of discussions about the cause of the progression and what is now, somewhat confusingly given my ability to do a very large amount of cardiovascular work, not just a rhythm problem but actually the early phases of heart failure. the two possible outcomes at this point are 1) it stops getting worse, meds and recent procedures help, and another long period of stability ensues. 2) heart transplant. the doctors are frankly divided on this, it's an unusual situation, and there really aren't many precedents. the doctors also continue to be divided on how much exercise is too much, ranging from "absolutely nothing other than walking to get somewhere" to "as long as you can have a conversation and aren't out of breath it's ok." at this point, of course, it's entirely possible the latter approach, and all the joyous, satisfying, wonderful cycling, created this new re-emergence of the problem as well as the heart failure symptoms.

so i have some hard choices. i have two kids. i can live without cycling. or, i can try to find a new happy medium, perhaps going back to riding with the motor actually turned on, and keeping my own input to the ride even lower still. for years i was sustaining around 200 watts of human power for 1-5 hours. lately i had been keeping it to 160. perhaps 120 would be below the threshold, and i could simply use the bike to make up the difference, doing the same rides at the same speed. better than nothing, but, the risk is not insignificant, and it's certainly less satisfying than what i've been doing. the third option is to throw caution to the wind, if it gets worse, it gets worse, i get a heart transplant, which completely cures the disease in question but of course brings with it numerous other risks and complications. if i was a single man, that's probably what i would do, to be honest. but i'm not.

on the bike front, i'll sell the aethos, sell the creo, and get a true electric road bike. the temptation of riding the aethos is too great and the creo is a great hybrid of a gravel and road bike, but i want a road bike. if i ride at all, other than to and from work and with my daughter on the back for errands and outings.
This is so tough on you. I have always admired your rides and approach to riding. I hope there is a happy medium that allows you to keep riding and looks after your health. That's what must be so frustrating for you- we ride for our health, both physical and mental. And then to be endangering your health by riding is a terrible thing to have to face. I wish you well on this road ahead.
 
trigger warning, this is a personal post and while ebikes are central, it's not really about ebikes.

i was always a pretty athletic person; i swam competitively as a child and young adult, ran track, and did long distance running in my early 30s for fun. while i rode bikes for convenience i never was a cyclist.

in my early 30s i was diagnosed with a fairly rare heart rhythm condition, typically genetic, which often manifests as young athletes dropping dead from sudden cardiac death. the condition, for those who are genetically predisposed, is actually progressed or caused by extreme exercise. so, doctors orders - no more extreme cardio. i struggled through two years of medication, procedures, surgeries, complications, mishaps, including months of hospitalization, two open heart surgeries, multiple defibrillation shocks, and much more. the idea of running or cycling was far from my mind. i also had a 1 year old at the time.

eventually, we figured things out, my condition stabilized and there was a long period of relative calm. the occasional glitch, but generally a normal life. a second daughter arrived. there is quite a bit of medical debate about "how much" exercise is too much for my condition (especially considering that i do NOT have the most common genetic mutations associated with it) and so, several years ago, looking for something healthy and fun and also useful, i got an ebike. i started with a front hub commuter, and really enjoyed riding it. within a month or two i purchased a specialized turbo creo, a mid-drive carbon road bike, and began riding it... a lot. i kept my heart rate at around 100bpm average, with perhaps 95% of the time between 80 and 110bpm. i did short rides, i rode it to work, i rode it up mountains, i did 100 mile plus rides, i did gravel rides and road rides. i rode it more and more with the motor turned off, realizing that it was - frankly - more fun to do the work myself, while keeping my heart rate in those parameters. i upgraded the bike extensively. carbon wheels, cranks, titanium speedplay pedals, one piece carbon cockpit, rear cassette, tubeless tires of course, etc etc.

so then i realized, why ride a relatively heavy (around 28lb at this point) ebike with the motor turned off? why not just ride a really light regular bike! so i got an "acoustic" road bike, a specialized s-works aethos. 12 speed dura ace di2 electronic shifting, the almost-lightest of everything, dual sided power meter, etc etc. it rides like a dream, a truly incredible machine. i kept riding at around the same pace, 500-600 miles a month, the same rides, 3 to 5 a week, i rode it to work and on rides from work, long weekend rides, all over the city and surrounding hills, mountains, coastal roads, forests, valleys, MUPs, etc. it rode most all the transit systems in the area, boats, trains, buses. loved it. kept my heart rate in that same range.

3 months ago i felt the familiar flurry of a cardiac arrythmia while riding. no big deal, i hadn't taken my meds for the morning and was stressed out. i rolled to the side of the road, got off the bike. sat down. unfortunately the rhythm persisted, and after a short period i lost consciousness and was shocked back to a normal rhythm. an unpleasant experience, waking up face down in the dirt with many fellow cyclists and joggers stopped to help me out. i took it easy for a while, talked to my doc, increased my meds. but now i noted that every couple rides i'd feel a little blip here or there. lowered my exertion quite a bit, now with all of the ride in the 70-100bpm range. only let it over 100 very rarely. adjusted medications further. two weeks ago this friday i was on a very mellow lunchtime ride. felt the now familiar feeling. stopped. this time, it did not go away. my implanted device tried to break the rhythm, without success. took the bike home in an uber, feeling very unwell. anxious about getting shocked. an hour or so later, sent my doctors a remote transmission, after which they immediately called and said "go to the ER right now, do not drive yourself."

so, the usual excitement of the ER, arriving with ventricular tachycardia and the subsequent flurry of activity, but just before they got to do anything exciting the rhythm broke and i was back to normal, if exhausted. however, the doctors were concerned enough to trigger two procedures/surgeries in the following days, more medication changes, and a number of discussions about the cause of the progression and what is now, somewhat confusingly given my ability to do a very large amount of cardiovascular work, not just a rhythm problem but actually the early phases of heart failure. the two possible outcomes at this point are 1) it stops getting worse, meds and recent procedures help, and another long period of stability ensues. 2) heart transplant. the doctors are frankly divided on this, it's an unusual situation, and there really aren't many precedents. the doctors also continue to be divided on how much exercise is too much, ranging from "absolutely nothing other than walking to get somewhere" to "as long as you can have a conversation and aren't out of breath it's ok." at this point, of course, it's entirely possible the latter approach, and all the joyous, satisfying, wonderful cycling, created this new re-emergence of the problem as well as the heart failure symptoms.

so i have some hard choices. i have two kids. i can live without cycling. or, i can try to find a new happy medium, perhaps going back to riding with the motor actually turned on, and keeping my own input to the ride even lower still. for years i was sustaining around 200 watts of human power for 1-5 hours. lately i had been keeping it to 160. perhaps 120 would be below the threshold, and i could simply use the bike to make up the difference, doing the same rides at the same speed. better than nothing, but, the risk is not insignificant, and it's certainly less satisfying than what i've been doing. the third option is to throw caution to the wind, if it gets worse, it gets worse, i get a heart transplant, which completely cures the disease in question but of course brings with it numerous other risks and complications. if i was a single man, that's probably what i would do, to be honest. but i'm not.

on the bike front, i'll sell the aethos, sell the creo, and get a true electric road bike. the temptation of riding the aethos is too great and the creo is a great hybrid of a gravel and road bike, but i want a road bike. if i ride at all, other than to and from work and with my daughter on the back for errands and outings.
Tough situation, and hope for the best for you (and family!). Can’t speak to the medical aspects, so the only thing I might recommend is an indoor smart spin bike, good fans, and apps like Rouvvy (or Zwift, but you’d need to keep yourself from overdoing it).

Allow you to get aerobic exercise, closely at home monitor and control your exertion, with staying safe near family without being solo out in the wild.

If you do get an e-bike, highly recommend a throttle in your case, and shorter rides with others. If it were me (which it’s not), just not worth it to risk my life, and do that to my family.

If you haven’t tried it yet, you might be surprised how much fun indoor smart spin bikes and the currents biking apps are these days.
 
Mark, the news of your medical condition have left me speechless. I can only wish you all the best and living happily for and with your family but am totally unable to say what you could do about your health and cycling... One might think cycling was good for one's health...
 
Tough situation, and hope for the best for you (and family!). Can’t speak to the medical aspects, so the only thing I might recommend is an indoor smart spin bike, good fans, and apps like Rouvvy (or Zwift, but you’d need to keep yourself from overdoing it).

Allow you to get aerobic exercise, closely at home monitor and control your exertion, with staying safe near family without being solo out in the wild.

If you do get an e-bike, highly recommend a throttle in your case, and shorter rides with others. If it were me (which it’s not), just not worth it to risk my life, and do that to my family.

If you haven’t tried it yet, you might be surprised how much fun indoor smart spin bikes and the currents biking apps are these days.

i just don't think i can enjoy sitting on a bike indoors. the only thing that would make it fun would be competing with myself to put out a few more watts or finish a little further in the virtual pack. obviously that's a no! but there's definitely some benefit to anything bad happening happening at home...
 
i just don't think i can enjoy sitting on a bike indoors. the only thing that would make it fun would be competing with myself to put out a few more watts or finish a little further in the virtual pack. obviously that's a no! but there's definitely some benefit to anything bad happening happening at home...
As some others have described with other threads, we all have to face reality at some point and adapt to our circumstances. You’ll never know how you really feel about riding an indoor spin bike or trainer, until you try. Could surprise yourself, and enjoy it.
 
i just don't think i can enjoy sitting on a bike indoors. the only thing that would make it fun would be competing with myself to put out a few more watts or finish a little further in the virtual pack. obviously that's a no! but there's definitely some benefit to anything bad happening happening at home...
The few times I've tried them, I quickly learned to hate exercise bikes, and treadmills as well. Best indoor workout for me is Nordic Track (ski machine), which is made tolerable by listening to music, or better yet, video on a little portable player (which I hope to purchase at Goodwill). I can do up to an hour's workout on the Nordic Track, and will resume doing so when the weather gets too snotty for bike riding.
Walked with a friend a few days ago, and a couple minutes into our walk, he suddenly upped the pace, and I had to work hard to keep up. He's quite athletic, and skis almost every weekend, though he found he'd almost forgotten how to ride his old 10 speed, and crashed it. Turned out he has some heart rhythm issues, and carries a little device that clamps on a finger and gives heart rate and oxygen something-or-other. He wondered why I didn't use such a device, and all I could think of was that my own sense of what's going on with my body is plenty of info for me, maybe even too much. Anyhow, we're both 86, and are living on borrowed time, so I can't work myself into a tizzy about my own health. True, my wife will be pissed if I die before cleaning up my workshop. I'll feel guilty about that up to the point when I'm actually dead, after which I won't feel anything at all.

Oh, just turned over 2,000 miles on the bike (took several years, and I realize some of you put on 2000 miles per month). But remarkably, I've never had a flat tire, and only needed to top up 3 or 4 times. The tires are CST Metropolitan Palmbay, 26X2.15. They have an ordinary street tread. It does say on the sidewall that they are for ebikes. Chinese, of course. They came on the bike, an Ariel Rider C class (step-thru). I have ridden them willy nilly, mostly on paved streets, quite a bit on gravel trails, and a few times on some very rough roads, where staying upright was a challenge. Even rode amongst goat heads in Eastern Washington. I do carry a spare tube and tire changing tools, but haven't needed them at all.
 
Mark, I’m so sorry you’re having this adventure. Just read your latest about your new Scott bike, which we’ll discuss over there.

Chalk me up as another hater of indoor riding of any kind. Once winter shuts us down, that’s what all these guitars are for! Any time we get over 35 degrees and the road shoulders get clear, the Creo makes an immediate reappearance, though. If I absolutely have to get that bike feeling, the local YMCA has pretty good virtual world trainers so I can go pretend to be in the south of France.

Back in the beginning of the whole Lyme/Babesiosis/Erlichiosis era I had a very exciting and nearly fatal adventure where I was designated as the Interesting Patient in the ICU. Boy, that is the very last thing you want to hear the big time Lyme specialist tell you. My AFib issues that commenced about five years ago to go along with the cardiomyopathy all seem to have their origins in that experience.

I’ve been fortunate to not have that Old Familiar Feeling for a couple years now, but I know it’s always out there. I’ll keep that Creo going till I absolutely can’t. Much respect on your attitude to find a way to keep pedaling.
 
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