50M, severe regurgitation, confused about symptoms?

[JoeWanderer]

Hi all! So happy to have found this site! I confess I've been trying to live a normal life and not worrying about my degrading aortic valve, but maybe now I'll finally have to deal with it.

I've known now for decades that I have an aortic valve regurgitation (detected when I first had an echo 25 years ago). It has progressed somewhat slowly but it has now been deemed "severe" since 2021. I have a very active lifestyle (running, road and mountain biking, hiking, etc.), and according to my Garmin watch my VO2 is on the top 5 to 1% according to my age. Last year I had to change doctors and, for the first time, my EKG was no longer "normal" (or at least I don't remember my previous doctor mentioning any problems). The data from my echo were somewhat stable, but still I couldn't help but getting somewhat obsessed about my condition. Additionally, I started having occasional chest pain, which however varies a lot in intensity and location for no clear reason, also "moving" to the abdominal region sometimes.

My sports performance has remained somewhat stable but very occasionally I've felt dizzy after a particularly hard run. Still, I've been able to run a half marathon last March and also a 90 km MTB trail last May. For the last four weeks I've had to travel extensively for work, and while I managed to keep running, the pain and the tiredness (which certainly has also to do with all the air travel and time zone switching) have made me even more anxious, which kinda feeds onto itself. Last Friday I felt specially bad, during a presentation I had to do I felt like I would faint and fall to the ground at any moment, but by the end of the day I was still able to join a happy hour, drink a few beers and even dance a little bit.

After coming home finally, I've been to the doctor yesterday, my echo is scheduled for next week. He was not very forthcoming about the pain, but mentioned that it's very hard to decide the right moment for AVR in the case of aortic regurgitation. He also feels that I should get a mechanic valve. AVNeo is not available in my country, and Ross seems to be in only one location, quite far from where I live - I haven't been able to discuss these options with him since I've only found out about them after the consultation.

So my first question to the forum is: how has been the disease progression for you guys, specially the ones who have "only" regurgitation (I don't have BAV or stenosis AFAIK). I wonder if my pains are real symptoms or if I'm just freaking out and "overmonitoring" myself. OTOH, my concern is that my stress will raise my blood pressure (it was actually 180 systolic at the doctor yesterday, something that had never happened before), and only speedup the valve degeneration process. Will be very glad to hear your thoughts about it!

 

[dornole]

You said your EKG was not normal - in what way was it abnormal? Do you have afib or some other rhythm issue now in addition to the valve stuff, and are they treating it?

 

[JoeWanderer]

You said your EKG was not normal - in what way was it abnormal? Do you have afib or some other rhythm issue now in addition to the valve stuff, and are they treating it?

That's a very good question, that I unfortunately didn't ask

However, on my EKG from last year there's the following note: "Sinus rhythm - left ventricle overload". I've also retrieved a random EKG from 2015 and I confess I don't see any change in the patterns, so maybe my previous doctor just didn't want to stress me?

Anyway, this is how the EKR looks like. I'll certainly ask the doctor about it in the next appointment, but by then I'll also have the echocardiogram results, which should be more relevant anyway, at least as far as the valve regurgitation issue is concerned. Once again thank you so much!

 

[Chuck C]

Welcome to the forum Joe.

it has now been deemed "severe" since 2021

I started having occasional chest pain

occasionally I've felt dizzy after a particularly hard run

When patient has severe regurgitation with symptoms, both the US and the EU guidelines call for surgical intervention. What you are describing are classic symptoms.

I wonder if my pains are real symptoms

You have severe regurgitation and have been severe since 2021. While it is possible that your symptoms are from something else, they are probably due to your severe valve condition. The safest approach would be to assume it is from your valve disease, unless proven otherwise. It is very common for patients to deny symptoms. You don't want to wait too long to get surgery, as the heart makes physical adaptions to overcome the severe regurgitation and the more it goes down that path, the lower the chances that it will fully recover.

He also feels that I should get a mechanic valve.

The guidelines call for a young person to get a mechanical valve, so he is following the guidelines with his recommendation for you.

Your mechanical valve should last you the rest of your life. Why delay surgery and risk irreversible heart damage? What is to be gained by waiting 6 or 12 months, if the risk is irreversible heart damage? BTW, being young you should have a very good recovery, with reversal of structural heart adaptions after surgery, but I would just not push the envelop in waiting too long.

With a mechanical valve you can still be active in your endurance sports. I have a mechanical valve and I run, bike, hike and do very physical martial arts. Others on this forum will share that they are also active after valve surgery. One woman, not a member, made the news a few years back after climbing Mt Everest with a mechanical heart valve.

Please feel free to ask any questions that you have. We are here to help in any way we can.

Best of luck in your decision and your eventual procedure.

 

[JoeWanderer]

First of all, thank you very much for your very thorough answer, Chuck C!

Your mechanical valve should last you the rest of your life. Why delay surgery and risk irreversible heart damage? What is to be gained by waiting 6 or 12 months, if the risk is irreversible heart damage? BTW, being young you should have a very good recovery, with reversal of structural heart adaptions after surgery, but I would just not push the envelop in waiting too long.

The reason I hoped my condition would take longer to deteriorate is to take advantage of any new technologies that wouldn't bring the inconveniences of a mechanical valve. However, I don't expect AVNeo (which seems to be the best option at the moment, though I'm not even sure I'd qualify for it) to be available in my country any time soon, so you're right that delaying the surgery for 6 months or 1 year doesn't seem to bring any advantages.

It's comforting to know that I'll be able eventually to resume sports, though I still worry about the valve noise (I'm quite sensitive to "clicking" sounds). Anyway, let's see what the exam results will look like. Once again thank you very much!

 

[Deidra]

The safest approach would be to assume it is from your valve disease, unless proven otherwise. It is very common for patients to deny symptoms.

Your mechanical valve should last you the rest of your life. Why delay surgery and risk irreversible heart damage? What is to be gained by waiting 6 or 12 months, if the risk is irreversible heart damage?

This is the best approach. There is no benefit in putting it off. In fact, I think you stand to gain quite a bit by pushing for the surgery earlier. Chronic aortic regurgitation is insidious because the heart has time to adapt to changes, which is why many people with aortic regurgitation are able to continue strenuous exercise. However, at a certain point, the heart cannot adapt any further. This is when potentially permanent damage can start to occur. This graph may be helpful to look at.

Long-Term Outcomes in Patients With Aortic Regurgitation and Preserved Left Ventricular Ejection Fraction​

Keep in mind this graph is for people who have preserved ejection fraction (55%+). Mechanical valves are incredibly safe, durable, and effective if you are diligent about INR management. There is no benefit in waiting. The younger and stronger you are before surgery, the better your chances of making a full recovery.

(I'm quite sensitive to "clicking" sounds).

I just had a mechanical Bentall procedure a month ago with a 27/29mm On-X valve. I have a thin frame so the clicking is quite audible. I'm the kind of person who can't deal with a ticking clock in a quiet room, and commonly find myself overstimulated by certain sounds and repetitive noises. In spite of all of this, I have had 0 problems with the clicking sound of the valve. I think having the mindset going into the surgery that it wouldn't be a problem or that I could adapt to it helped a lot. Also the fact that it's keeping me alive helps a lot. (And now I can take my pulse just by listening which is helpful lol)

So my first question to the forum is: how has been the disease progression for you guys, specially the ones who have "only" regurgitation (I don't have BAV or stenosis AFAIK).

This has been somewhat answered already but figured I'd share my experience. I was diagnosed moderate-severe regurgitation in 2020, which then moved to severe in 2023. Throughout that time frame I have been moderately active, walking 10000 steps a day, with light jogging and biking here and there. For the first year or two I didn't have any noticeable symptoms. In 2023 I started feeling much more fatigued throughout the day, even if I had slept well. I had occasional left sided chest pains that radiated to the arm. I had to take an afternoon nap almost every day just to get through the day. I would get more tired walking up hills or steps than I did before, and I would feel my heart beating very hard when I did.

 

[Chuck C]

Also the fact that it's keeping me alive helps a lot. (And now I can take my pulse just by listening which is helpful lol)

That is so cool! I wish my valve was loud enough that I could take my pulse by listening to it. I almost never hear mine, even when it is totally quiet.

 

[pellicle]

Hi

(I'm quite sensitive to "clicking" sounds)

many of us are ... however as to me its not a "clicking sound" its just the sound of my heartbeat which while now more clear to me has been present and discernible by me for most of my life.

Note I didn't say "heard" because I sort of feel that saying to people "I hear it" brings up the wrong idea. Few sounds (stomach grumbles, clicks coming from necks and knuckles) originate inside our body. Some are quite audible to those around us (some we manage to sneak out carefully), while others not so much.

Its like if I tap you on the forehead with my finger, you'll hear it more clearly than the person next to you does -> because your ear drums are inside your head and the sound is conducted through to them by means other than the ear drums <-

Like @Deidra I can easily take my pulse by just tuning into that "internal sound" and more to the point I'm aware of what my HR is (well, in the way that a musician is aware of the tempo of music). Accordingly if that tempo changes I get pretty instant feedback. This is something I value because (not least) it lets me know when I'm stressed out by something / someone in an undeniable way.

It also cued me in on my tachycardia when it first started. Indeed if I had any arrythmia (more likely if one gets any heart issues such as valves) emerge (as tachycardia did) then not only do I know about it soon (and others may not) but I'm already on the drug that would be prescribed for management of that (aka Warfarin) so I have one less thing to worry about.

I'm not really sure if you are (or if you are why you are) concerned about being on anticoagulation therapy known more commonly as (insert organ chord from 20's horror movie) "Blood Thinners" but its actually not as bad as you may think. I could talk for hours on that topic but I'll leave that for another occasion ;-)

Like @ChuckM said ... hit us up with questions as "we've been there and done that for some time" (which btw is the actual meaning of Sensei and implied in the phrase "yoroshiku onegaishmasu").

Best Wishes

 

[pellicle]

Also, @JoeWanderer it might be worth seeing if you can strike up conversation with @Jack Julles Jackson who's also from Brazil. He may have time to discuss with you issues that surround mechanical valve and access to warfarin and self testing in Brazil.

I'll also reach out directly to him (as he's not been here for a little while).

Fingers Crossed

 

[JoeWanderer]

Once again thank you so much guys!

For me it's essentially clear now that mechanical is the way to go for my condition. People are complicated - I guess I took some pride in saying, whenever asked before, say, blood exams, that I don't take any medication. So it seems I'll have to swallow my pride eventually. Still, I'm curious about any possible side effects of anticoagulants, but I'll keep reading the old posts and other sources to find out. I'm pretty much a numbers freak and rather disciplined so INR management shouldn't be an issue.

Still, and I know I'm taking some tangents here, I wonder:

- it seems science still doesn't have a good answer on how and why this disease evolves, so I can't help but thinking that I could have done something differently. I know it's an useless line of thought but I wonder if I've been too physically active (or if it has actually delayed the process) or even if I've eaten too much cheese ... I ask that because I've been monitoring this for 25 years, and actually the evolution from discreet to moderate to severe has happened, as far as I remember, in the last 8 years approximately. Is that a normal pattern based on your experience?
- as your disease evolved have you noticed any changes in your resting heart rate? For me so far I'm still in the low 40s during sleep, but I feel that during the day it has raised a little bit to the upper 40s/low 50s, but I'm not sure. During exercise I do notice sometimes my heart rate going some 15-20 bpm above expected for a few minutes, then going back down to "normal" levels for no particular reason. Anyway I'll be doing a treadmill stress test today, let's see how it goes.

 

[pellicle]

Still, I'm curious about any possible side effects of anticoagulants, but I'll keep reading the old posts and other sources to find ou

Basically none. It's been in use for over 70 years now. The only problem is the idiots in clinics.

 

[Deidra]

- it seems science still doesn't have a good answer on how and why this disease evolves, so I can't help but thinking that I could have done something differently. I know it's an useless line of thought but I wonder if I've been too physically active (or if it has actually delayed the process) or even if I've eaten too much cheese ... I ask that because I've been monitoring this for 25 years, and actually the evolution from discreet to moderate to severe has happened, as far as I remember, in the last 8 years approximately. Is that a normal pattern based on your experience?
- as your disease evolved have you noticed any changes in your resting heart rate? For me so far I'm still in the low 40s during sleep, but I feel that during the day it has raised a little bit to the upper 40s/low 50s, but I'm not sure. During exercise I do notice sometimes my heart rate going some 15-20 bpm above expected for a few minutes, then going back down to "normal" levels for no particular reason. Anyway I'll be doing a treadmill stress test today, let's see how it goes.

For point number 1, I think there really hasn't been a scientific consensus on what causes these changes other than genetics. But as pellicle has pointed out before, the progression of a disease/rate of failure is not always linear. Sometimes it's fine for a long while and then suddenly starts getting worse. For many of us, I would think that there isn't any particular lifestyle change that would have prevented this.

For point number 2, yes my resting heart rate did go up as my regurgitation got worse, from about 50 to around 70. I think this is common from what I've heard, the heart trying to compensate for the disease through various ways. When your heart rate is higher, the amount of regurgitation becomes less and less because there's less time for the blood to flow backwards. This is part of the reason why many people with severe regurgitation maintain their exercise capability. I recall a study where they linked higher resting heart rate to worse outcomes for patients with aortic regurgitation: https://www.jacc.org/doi/10.1016/S0735-1097(19)32565-3

 

[Timmay]

I was 50 when I got my aortic valve replaced. I remember being confused as to what the best choice in valve would be. I am so so so so happy I went with a mechanical valve. It was the correct choice for me. It wasn’t until later that I realized HOW correct that choice was. Open heart surgery was a tough experience for me. I never want to go through that again. A Mech valve sets me up for a higher probability of never doing it again. Woo! Tissue valves in active people can fail earlier than the average.

I agree with everything Chuck expressed above. You want to get surgery before symptoms start. You don’t want your heart to adapt too much to the current situation. Otherwise, it might have a hard time reversing course (if it even can). The best results according to the studies are with those who get a replacement before their heart adapts irrevocably.

 

[pellicle]

sorry this bit is late ..

Is that a normal pattern based on your experience?

first let me say that there is no simple answer to aetiology of valvular heart disease. The progression of the disease is similarly vexing. Sometimes its better to forget the why and focus on handling the actual issues of what to do from here.

I've had some friends die of cancer; I don't recall them spending much time on why they got it.

So as to the normal pattern the problem is that also doesn't help you because there is quite an amount of diversity in how things go. For instance you could feel something sharply and be 'moderate' or you could not notice anything and be found to be severe.

Accordingly I think its best to just focus on the how we go forward from here (not least because there is no way to go back)

Best Wishes

 

[JoeWanderer]

This is part of the reason why many people with severe regurgitation maintain their exercise capability. I recall a study where they linked higher resting heart rate to worse outcomes for patients with aortic regurgitation: https://www.jacc.org/doi/10.1016/S0735-1097(19)32565-3

Interesting point - last time I had a CPET (the "fancy version" of the stress test) the doc applying it did mention that exercise capability is a difference between regurgitation and stenosis. BTW I had my stress test today and it was mostly fine - VO2max above 60 and "almost" everything normal, except for "isolated, monomorphic ventricular extrasystoles" (whatever that means). Also got my blood tests back, and the sole point of concern is the BNP result, which is close to 100. I understand this is not normal, not sure how bad it is though.

sorry this bit is late ..


first let me say that there is no simple answer to aetiology of valvular heart disease. The progression of the disease is similarly vexing. Sometimes its better to forget the why and focus on handling the actual issues of what to do from here.

I've had some friends die of cancer; I don't recall them spending much time on why they got it.

So as to the normal pattern the problem is that also doesn't help you because there is quite an amount of diversity in how things go. For instance you could feel something sharply and be 'moderate' or you could not notice anything and be found to be severe.

Accordingly I think its best to just focus on the how we go forward from here (not least because there is no way to go back)

Best Wishes

You're absolutely right and, as I said, I know very well it's kinda pointless (in the sense that I'll not become a scientist to try to discover the real reasons for the valve degeneration in order to provide less invasive treatments). I can only hope actual scientists are doing that, though - I wish that, in the future, people with the same problem will not have to go through open heart surgery and all other consequences. But I'm trying to shift my mindset to the "glass half full" mode, in the sense that at least there's a treatment available ... having lost both of my parents and quite a few friends and colleagues to cancer (some younger than I am today), I know well that's not always the case.

One final note: I'm sure some of you have faced this, but it's hard to explain to people (starting by my family) that somebody apparently quite fit and with good eating / exercise / etc. habits will have to go through an open heart surgery. It's just one more challenge that (it seems) I'll have to face in this long process ...

 

[pellicle]

I can only hope actual scientists are doing that, though - I wish that, in the future, people with the same problem will not have to go through open heart surgery and all other consequences.

I've said this before; my heart surgery (and I've had 3) have been formational in my life. I am who I am because of them.

As a young lad I was concerned that I'd pass that on to my kids, that didn't happen. Now in this modern world I think we have no challenges in life. Personally I think challenges in life are events that can make you stronger.

Best Wishes

 

[Deidra]

But I'm trying to shift my mindset to the "glass half full" mode, in the sense that at least there's a treatment available ... having lost both of my parents and quite a few friends and colleagues to cancer (some younger than I am today), I know well that's not always the case.

This is a great way to look at things. I kept reminding myself about this before surgery. There is a very effective and safe solution for our condition. For many diseases that isn't the case at all. Yes, we trade our original problem for the problems associated with prosthetic heart valves, but in most cases, it does mean the original problem is completely fixed. And those prosthetic heart valve problems are much preferable to the problems associated with untreated severe aortic regurgitation/stenosis.

 

[pellicle]

@JoeWanderer

on "why" I know that my knowledge of my condition led me to my initial degree of biochemistry, because I was sure (in my own head, long before it was certainly established) that it was a genetic condition and in the early 80's genetic engineering was a burgeoning field. While I've long since abandoned trying to work in that area (moved into IT in the 90's along with some of my fellow biochem cohort), I can say that I've kept abreast of the whole thing and continued (pretty much all my life) examining myself in the light of what emerges in science.

Lets look at this "correlation"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10355074/

Bicuspid aortic valve (BAV) ​

Tricuspid aortic valve (TAV) (normal people)​

​

This study confirms less atherosclerosis in the ascending aortic wall and coronary arteries of BAV patients as compared to TAV patients. These results were not affected by the presence of a thoracic aortic aneurysm.​

bold mine

So imagine you lived in a time past where foods were high in fat (to survive better in the cold) and the chances of you living past 50 were slim anyway. Would this "genetic adaptation" be better or worse for you?

This adaptation (or genetic disease in another light) makes it possible to live longer in malaria invested areas:
https://pubmed.ncbi.nlm.nih.gov/23170194/

Sickle cell anaemia and malaria​

...On one hand, heterozygotes for the sickle gene (AS) are relatively protected against the danger of dying of malaria, as now firmly established through a number of clinical field studies from different parts of Africa...​

So what is bad can also be good... Nature is interesting and genetic diversity is there because it provided survival of the species, not for you or me.

I know this doesn't answer the exact mechanism but perhaps that's not needed.

Best Wishes

 

[Lucker]

BNP result, which is close to 100

Actually it's in the high normal range. BNP is a marker of a struggling myocardium.

 

[Jack Julles Jackson]

Also, @JoeWanderer it might be worth seeing if you can strike up conversation with @Jack Julles Jackson who's also from Brazil. He may have time to discuss with you issues that surround mechanical valve and access to warfarin and self testing in Brazil.

I'll also reach out directly to him (as he's not been here for a little while).

Fingers Crossed

Im here if you need any help. o/