New member; Alarmed at decreasing EF %

[Gloria Mundi]

Good afternoon (at least in my time zone). I was diagnosed with mitral valve prolapse and an enlarged heart in mid-2021, at age 68. Main symptom was shortness of breath on exertion, especially walking or bicycling uphill. LDL on the high side but not alarming, not on medications, calcium score is 1, took a treadmill test in mid-2021 and cardiologist never ordered a repeat making me think I did pretty well. I'm disciplined with daily cardio workouts (some might say obsessed), normal BP and body weight, healthy diet most of the time. Cardiologist says it's a Stuff Happens thing, nothing I did to cause it and, as most know here, nothing I can do to reverse it, just work to keep it form getting worse.

So- my annual echocardiogram was 2 days ago. Up to now, EF has been stable at 65-70%. Now it's 55-60%. Honestly I didn't think it was getting worse but it may have been too gradual to notice. I meet with the cardiologist in 3 days (Tuesday). Up to now he's been very supportive of my activity, my travels (hiked Macchu Picchu in May with only the usual precautions against altitude sickness and no ill effects, can bicycle 20 miles if the path is level), and hasn't even mentioned surgery. Now I'm wondering...is it time? I see here and elsewhere stories of waiting too long and the deterioration resulting in additional problems that persist beyond surgery. I have no other health issues and I'd think I'd have a better chance at a good outcome when I'm still in good shape otherwise.

I'd love to read others' thoughts and experiences. I know there are no cookbooopk answers and when I see the ages of some of the people posting here I have to remindmyself how many good years I've had so far- but I want more!

 

[pellicle]

Hi Gloria

of course I'd be guided by your professionals, but its sounding like its approaching time to throw away that worn out part and get a new bit of plumbing installed, before it destroys the pump.

I've had 3 OHS in my life and while there was a bit of difficulty during the recovery I live in the now and that was the past.

Your cardiologist is right, its "nothing you did" but when these things start to fail the progression is not linear, so failure points are harder to project. Roughly it goes like this.

Don't try to put it off longer than advised because that really does "just work out worse for you"

Best Wishes

 

[Protimenow]

Gee, I WISH my EF was 55-60%.

I won't even think about giving you advice.

I had a bicuspid aortic valve and replaced it with a mechanical valve when I was 41 - but even at that young age, I still had significant cardiomyopathy.

Listen to your doctor. Get other opinions if you like. Be comfortable whatever you decide - and if you decide to wait, keep up with regular testing.

 

[Gloria Mundi]

Thanks-I know there's no cookbook answer to this. I'm gathering information and anecdotes because that's about all I can do. I've been diligent about regular monitoring and because I'm a special kind of hypochondriac, I keep tabs on my resting heart rate (under 60), heart rate range during exercise, VO2 Max and occasionally my Blood Oxygen with my Apple Watch. I have a series 8 and so far they haven't disabled that function-it's never very exciting anyway except when it dropped to 90% at high altitude in Peru. I kept up with the Acetylzolamide, chewed coca leaves and kept going.

I have deliberately NOT read up on how to interpret the EKGs it can take. I figure that way lies madness. At this point I'm almost hoping that he recommends surgery when I see him Tuesday. I'd really like to get some of the "old me" back.

 

[Protimenow]

I have an Apple Watch 7. I find that the blood oxygen function takes a lot of time. I'm not entirely sure how accurate it is.

When I want a (probably) more accurate result - much faster - I use a cheap pulse oximeter.

The ECG on my watch usually returns an 'inconclusive' report because of my arrhythmias, but I can still view it on my iPhone.

 

[dornole]

Well, I wouldn’t panic - see what your doc says, but understand that your EF is a calculated number, and echos do show some variation. If they are concerned about you they will likely either put you on more frequent monitoring or do a TEE to check the result. I’ve had TEEs twice and both times they showed the regular echo was overly gloomy.

The folks I know who have a bad result from waiting too long are those who went against medical advice or didn’t keep up with their echos. You seem very engaged in your care.

 

[pellicle]

I have deliberately NOT read up on how to interpret the EKGs it can take. I figure that way lies madness. At this point I'm almost hoping that he recommends surgery when I see him Tuesday. I'd really like to get some of the "old me" back.

good plan!

 

[Midpack]

Hi! You mentioned that you have a mitral valve prolapse. But is your mitral valve actually leaking? Is so, what is the degree of regurgitation? It is usually classified as mild/moderate/severe.

regards.

 

[Gloria Mundi]

Well, I wouldn’t panic - see what your doc says, but understand that your EF is a calculated number, and echos do show some variation. If they are concerned about you they will likely either put you on more frequent monitoring or do a TEE to check the result. I’ve had TEEs twice and both times they showed the regular echo was overly gloomy.

The folks I know who have a bad result from waiting too long are those who went against medical advice or didn’t keep up with their echos. You seem very engaged in your care.

Thanks- this is reassuring. I also talked to my priest this morning- I knew he hard heart issues. He's 74, had a heart attack and was diagnosed with T2 diabetes 20 years ago and had valve repair- basically a collar around it, no replacement. His EF is 45% and he goes to the gym every day and just finished a Ph.D. Yes, I'm VERY engaged in my care! I can see why some docs don't like the patient having access to test results on-line because they ca get alarmed, but I'm glad I've had this lead time before my visit.

And Midpack, it's classed as "severe".

 

[Midpack]

Gloria:

If the mitral insufficiency is severe and the EF is below 60%, it Is very probable that your cardiologist will recommend a mitral valve repair. In good hands, this surgery has an excellent outcome. A repair is always preferable to a replacement (for mitral valve) and can be achieved in almost all cases.

On the other hand, I would ask if your EF can be confirmed by another specialist as being effectively below 60%. EF calculation has an strong interobserver variability. I wouldn't be surprised if someone measures it at say 58% and another one at 62%, for instance

You will be ok.

regards.

 

[Protimenow]

When I first became concerned with my EF - it was 40, and gradually declined, I checked to see what the normal EF should be. IIRC, 'normal' is around 60.

Nobody's EF is 100%, AFAIK, so having a 60% is not a dire prediction of failure (people, at least me, expect 100% to be normal - it isn't).

Yes, listen to your doctor. If you're unsure, get another opinion. But you can take some comfort in the knowledge that a 100% EF isn't the 'normal' value.

 

[Midpack]

Prometinow, 50 to 70% is a normal EF for a normal heart (without any structural disease). But, in the context of severe mitral insufficiency, where a portion of the blood goes back to the atrium instead of out by the aorta, a cut off value 60% is what the consensus generally consider for surgical referral. Of course I am not a cardiologist, but I have this same heart problem myself and have talked about it countless times with several cardiologists on occasion of my regular checkups.

By the way, another key value, that is also a measurement of left ventricle function and is closely followed by cardiologists in this context, is "end of systole diameter". It should be below 40mm.

Regards.

 

[V__]

Up to now, EF has been stable at 65-70%. Now it's 55-60%.

My memory matches what @Midpack has said, that the normal range is 50-70%. From this perspective, 70% is very high, at the upper limit of the normal range. 60% is exactly in the middle, and 55% is on the low side, but still normal.

So... I think you need a cardiologist's evaluation to see if the graduate relative reduction (while still being in the normal range) is important.

The echo test yields many parameters of the evaluation. (In my test results over the years I've seen between "few" and "few dozens".) I would agree that the EF is very important, but a lot of other parameters are important as well. For example, whether the LV is enlarged, whether the heart wall thickened, the regurgitation parameters. Which should all be taken into account to produce the usual grading of none(trivial)/mild/medium/medium-severe/severe.

And Midpack, it's classed as "severe".

Then a referral to surgery is very likely. Or other tests first (TEE, angiography/catherization), then the referral.

In a way, the mitral valve regurgitation a good problem to have: it could be followed well, the intervention can be planned ahead, and MVr has low risk with an excellent outcome (I had one).

 

[vitdoc]

I don't think in the cardiology world the precise time to deal with mitral insufficiency is super clear. In general mitral insufficiency tends to be a slow process and often can be monitored for quite a long time. I had long standing insufficiency which sudden markedly deteriorated where I went from bicycling 40 miles to having trouble going up a flight of stairs. In my case there was not too much discussion of doing something ASAP. The only issue was what to do. Since I had previously had three open hearts for aortic valve and aneurysm of the aorta no one was very eager to open me up a fourth time. I was however scheduled for surgery but at the last minute the surgeon rethought things and suggested I get a mitral clip procedure which I had been thinking about.
So I had two clips placed about 7 1/2 years ago. This was done through the groin without any chest surgery. I went home the following day and my symptoms almost immediately went away and I was on my bicycle as before. So a single report like mine should not make your decision but it should at least inform you of other options that frankly from my perspective were markedly better than a fourth open heart would have been. Talk with your physicians about this as an option. If say in the future the clips fail you can still have open heart surgery. But they might not fail and you have avoided something that is at least to my mind would be nice to avoid.

 

[Gloria Mundi]

Thanks! I know I'm collecting more anecdotes than data (and the plural of anecdotes is not data ) but they're helping me shape my questions for tomorrow's visit. these posts have also shown me how many people have been managing MVP from a relatively young age and the "Active Lifestyle" Board is full of people like me who will want to get out of bed after any procedure and start moving again. I've got 3 grandchildren I love dearly- they're only 9, 7 and 4 and I want to have many more good years with them as well as travel to many more interesting places. I've already got Central America scheduled in May and a small-ship Baltic cruise in September.

Qs so far for the cardiologist:

Are you concerned about the change in EF?
Is it time to think about surgery? Why or why not?
What's the likelihood that if this continues to worsen I'll develop additional issues (e.g. afib, which was one person's experience on another board) that the surgery won't correct?
If he convinces me that surgery isn't necessary- should we do another echo in 6 months rather than waiting another year? And what WOULD he consider an indication that surgery is necessary?

I may have more. And now it's time for my treadmill walk.

 

[V__]

I know I'm collecting more anecdotes than data (and the plural of anecdotes is not data )

Between this statement and your forum/name tag, I'm starting to suspect a case of over-education

but they're helping me shape my questions for tomorrow's visit.

Sure thing. Discussions are helpful this way.

Qs so far for the cardiologist:

Are you concerned about the change in EF?

I'd also ask if they agree with the "severe" classification of the echo test. My cardiologist did not completely agree with somebody else's conclusion in this regard.

Is it time to think about surgery? Why or why not?

@vitdoc also pointed out a possibility of transcatheter procedure that, in principle, you can ask about.

What's the likelihood that if this continues to worsen I'll develop additional issues (e.g. afib, which was one person's experience on another board) that the surgery won't correct?

There is also a possibility of Afib as one of consequences of the surgery. But, if you are indeed in "severe" stage now, then the next stage of development is heart getting weaker, "giving up" and getting into heart failure state. Basically the heart keeps changing and the prognosis would be worse, even if they can do the surgery later on.

 

[dornole]

Just to add to what other mitral folks said above - my understanding is that for mitral valve patients, the EF can appear artificially elevated, so 60% is in fact not normal and can be a cause for concern and follow-up tests. The ranges used for those with aortic valve issues or indeed other heart conditions don’t apply.

 

[Woodcutter]

The attached document by some Cleveland Clinic doctors may be of interest. The section on mitral valve regurgitation starts on page 477. This is about a decade old but I found it helpful around the time I underwent mitral valve work. A key point is what has been previously mentioned: "In mitral regurgitation, the ejection fraction does not accurately reflect ventricular function". The left ventricle dilates to accommodate the leakage which results in the ejection fraction (which is a calculation) increasing. What is critical is to correct the problem before the left ventricle is permanently impaired.

Put differently and oversimplified: the ventricle is going to stretch out and expand so it can hold more blood so that when it pumps, the right amount of blood goes to the body despite all of the leakage being sent back to the atrium. The leakage needs to be corrected before that stretching out becomes permanent. This can take decades but can degrade rapidly.

The challenge of valvular heart disease: When is it time to operate?

 

[Gloria Mundi]

Thanks- that article is really helpful. I could make myself a nervous wreck by going back over my results and looking at left ventricle measurements and function, but I won't. I know they first found cardiomegaly on a breast MRI in 2021 and I do remember the echo reports mentioning areas that were enlarged, so it sounds like a lot of the decision will rest on how the left ventricle looks and how that's changed over time.

When I look back I first noticed what might have been symptoms when I got tingling sensations on the bottoms of my feet during exercise, about 10 years ago. Getting new shoes didn't help and I just learned to live with it. It's now spread to my calves and I pretty much ignore it, but it has to be circulatory.

I'm just hoping for monitoring or minimally-invasive such as trans-catheter. I live alone and my only child, my son, lives 3 hours away. The good news is that he can work from anywhere but I'd hate to ask them to come down with the kids (who are home-schooled) for more than a week or so if I had OHS. They have their own lives. I suppose t's also good news that if I need some assistance at home I can afford it.

And yes, V, I'm over-educated! I'm a retired actuary, a bit of a hypochondriac and fascinated by human biology, so I tend to over-analyze. The neat decision tree in the Cleveland Clinic article was right up my alley even though I know it's dated. I hope my cardiologist has a more-current version (and applies his own judgment).

Appointment is later this morning. I'll keep you all posted.

 

[Gloria Mundi]

Well, THAT was a non-event. He repeated what I'd seen here and elsewhere- EF is subjective. Everything is stable, including left ventricle size/function. Nothing to see here, you're doing great at exercise, keeping weight normal, healthy BP, etc. Come back in a year.

I don't regret going down the rabbit hole of panic followed by posting followed by research. As my late husband used to say (quoting Gen. George Patton), "All fact are friendly".

Tonight when I pour my 2-oz. ration of scotch I think I'll break out a bottle of the Good Stuff I bought in London last year.