30% Ejection Fraction --- limitations?

[Protimenow]

We may have covered this in another area, but I'm too lazy to look for it.

My ejection fraction is 30% (maybe less?), and I'm curious about the limitations this would have on me.

I'm doing as much as I can, but still running out of breath pretty quickly. I'm not entirely sure if this means that blood to the brain is as good as it was when my EF was, say, 50%+.


My electrocardiologist changed out my old pacemaker for one that also defibrillates, if I ever need it (I actually had a run of tachycardia a few nights ago, but it stopped before my defibrillator kicked in).

Do any of you have EFs of 30% or below? What's your experience been?

Members with knowledge of this issue are welcome to chime in.

I'm taking a new medication - approved in May - Inpefa that my doctor described as 'Farxiga times ten.' I'm using a 30 day free trial, but worried about what it will cost when insurance has to help - I probably can't afford it (or afford NOT to use it). So far, my hands are pinker than they've been for some time, so the stuff probably helps.

Have any of you tried this?

Any comments are appreciated.

 

[ashadds]

do they know a reason for the low EF ? for example is your valve fine

 

[Protimenow]

My valve is fine. My other valves are fine.
My coronary arteries are fine.

When I had an echo at the hospital, they did a bubble test (to see if blood was traveling across the septum in the heart - a hole that should have closed at birth, and the test was negative.

BUT my EF is getting progressively worse - it was around 40 a year or so ago, then dropped to 35 about 8 months ago - and now it's around 30. I took it for granted. I didn't ask WHY it dropped. The doctor didn't suggest anything that can make it increase.

I know that I've got pretty serious cardiomyopathy, but don't know if (or how much) this contributes to it.

Maybe I wasn't active enough - but this is a downward spiral -- I have less energy to do a lot, and the less I do, the worse it gets - and when it gets worse, I have less energy - and so on.

I'm taking a new medication (I already said this here, or elsewhere) that might be helping a bit - but I'm really scared that I won't be able to afford it (yeah, it may help me live longer, so there are some tradeoffs - eat or medicate - but I don't know how much the insurance will cover, so I may be worrying prematurely).

 

[nobog]

About 1 minute of looking on the web:

1.
How do you fix low ejection fraction?
Getting the appropriate amount and intensity of exercise, losing weight, quitting smoking, reducing salt or excess fluids, and eating a healthier diet are some of the recommendations for improving low EF.

2. A low number can be serious. If your ejection fraction is 35% or below, you’re at high risk of developing a dangerous arrhythmia or even heart failure.

 

[KenH]

My ejection fraction fell from about 45-50% to about 30% after my heart surgery 3 years ago (AV replacement, MV repair, PFO closure, and bypass - busy day for all). The surgeon and cardiologists could not provide a reason for the decline. Regardless, my cardiologist prescribed Entresto (49/51 mg), metoprolol, and implanted a defibrillator. I was pretty active before the surgery and continued to exercise routinely after. I do get breathless and have had an episode or two of ventricular fibrillation (stopped before the defibrillator had to do anything). Four years hence, my ejection fraction has recovered to about 50% based on my 2023 echocardiogram (I'll feel a bit more confident after getting a confirmatory result from next year's echo). I believe that this is due to the continued exercise and Entresto.

Entresto is a pretty expensive medication. Before joining Medicare, I was able to get co-pay support through Novartis which made the prescription very affordable. On Medicare, I rely on my Part C prescription drug plan which helps a lot, but, I still fall into the "donut hole" mid-way through the year and have to pay an increased amount. I see that Inpefa also has a co-pay program. This may be available to you if you are not on Medicare. Co-pay support was definitely worth pursuing before I joined Medicare.

Good luck with the Inpefa. I hope it does it's thing and reverses the decline in ejection fraction.

 

[ashadds]

We may have covered this in another area, but I'm too lazy to look for it.

My ejection fraction is 30% (maybe less?), and I'm curious about the limitations this would have on me.

I'm doing as much as I can, but still running out of breath pretty quickly. I'm not entirely sure if this means that blood to the brain is as good as it was when my EF was, say, 50%+.


My electrocardiologist changed out my old pacemaker for one that also defibrillates, if I ever need it (I actually had a run of tachycardia a few nights ago, but it stopped before my defibrillator kicked in).

Do any of you have EFs of 30% or below? What's your experience been?

Members with knowledge of this issue are welcome to chime in.

I'm taking a new medication - approved in May - Inpefa that my doctor described as 'Farxiga times ten.' I'm using a 30 day free trial, but worried about what it will cost when insurance has to help - I probably can't afford it (or afford NOT to use it). So far, my hands are pinker than they've been for some time, so the stuff probably helps.

Have any of you tried this?

Any comments are appreciated.

Thanks for the context, I know that the valve going bad can definitely cause heart damage and mostly it remodels and recovers post AVR but sometimes it doesn't but the downward spiral is indicative of further deterioration. Could cardiomyopathy have been caused due to the bad valve ? also is it dilated or hypertrophic cardiomyopathy

 

[Deepak khanka]

My ejection fraction fell from about 45-50% to about 30% after my heart surgery 3 years ago (AV replacement, MV repair, PFO closure, and bypass - busy day for all). The surgeon and cardiologists could not provide a reason for the decline. Regardless, my cardiologist prescribed Entresto (49/51 mg), metoprolol, and implanted a defibrillator. I was pretty active before the surgery and continued to exercise routinely after. I do get breathless and have had an episode or two of ventricular fibrillation (stopped before the defibrillator had to do anything). Four years hence, my ejection fraction has recovered to about 50% based on my 2023 echocardiogram (I'll feel a bit more confident after getting a confirmatory result from next year's echo). I believe that this is due to the continued exercise and Entresto.

Entresto is a pretty expensive medication. Before joining Medicare, I was able to get co-pay support through Novartis which made the prescription very affordable. On Medicare, I rely on my Part C prescription drug plan which helps a lot, but, I still fall into the "donut hole" mid-way through the year and have to pay an increased amount. I see that Inpefa also has a co-pay program. This may be available to you if you are not on Medicare. Co-pay support was definitely worth pursuing before I joined Medicare.

Good luck with the Inpefa. I hope it does it's thing and reverses the decline in ejection fraction.

Hi Ken
Correct Entresto is an excellent drug . I have a question once your EF dropped after your surgery were you referred to Heart failure doctor who prescribed you entresto .
2. Are you on any other meds and if so which ones
Thanks
Deepak

 

[Deepak khanka]

My valve is fine. My other valves are fine.
My coronary arteries are fine.

When I had an echo at the hospital, they did a bubble test (to see if blood was traveling across the septum in the heart - a hole that should have closed at birth, and the test was negative.

BUT my EF is getting progressively worse - it was around 40 a year or so ago, then dropped to 35 about 8 months ago - and now it's around 30. I took it for granted. I didn't ask WHY it dropped. The doctor didn't suggest anything that can make it increase.

I know that I've got pretty serious cardiomyopathy, but don't know if (or how much) this contributes to it.

Maybe I wasn't active enough - but this is a downward spiral -- I have less energy to do a lot, and the less I do, the worse it gets - and when it gets worse, I have less energy - and so on.

I'm taking a new medication (I already said this here, or elsewhere) that might be helping a bit - but I'm really scared that I won't be able to afford it (yeah, it may help me live longer, so there are some tradeoffs - eat or medicate - but I don't know how much the insurance will cover, so I may be worrying prematurely).

Do you have swelling of your ankles or legs below knees . How many pillows do you use while sleeping I.e. do you need to sleep on an incline or do you wake up in the night gasping for air . If any of these pls express this to your cardiologist

 

[KenH]

Hi Ken
Correct Entresto is an excellent drug . I have a question once your EF dropped after your surgery were you referred to Heart failure doctor who prescribed you entresto .
2. Are you on any other meds and if so which ones
Thanks
Deepak

Hi Deepak,
I did not receive a referral, my regular cardiologist prescribed Entresto based on a couple of echocardiogram results. The cardiologist also referred me to an electrophysiologist for an implanted defibrillator due to the low EF. My current medications are Entresto 49/51mg twice per day (I could not tolerate the highest dose due to BP and heart rate concerns), metoprolol 25mg twice per day, aspirin 81mg, atorvastatin 80mg, and warfarin ~8mg.
Regards,
Ken

 

[Protimenow]

Deepak:
Actually, no. I'm not exhibiting the classic signs of CHF -- no edema in the lower legs -- if any, it's not obvious.

I sleep on one of the beds (I'm in an Extended Stay place with crappy beds) under my left knee so I don't sink into it and hyperextend it.

I can sleep with one or two pillows under my head.

If I didn't have two broken ribs, I'd probably lay on my side.

I can take full breaths - about 300 on a spirometer. But it doesn't take much to get out of breath, and takes a while (10-15 minutes or so) to feel strong enough to keep going if I've done more than I'm able to do. At the end of the day, I often need a nap.

It's been a LONG time since my OHS to replace a bicuspid Aorta, but I'm pretty sure that this is worse - it takes longer to recover now than it did with the bad valve.

I had one run of tachycardia last week - but it stopped before my pacemaker zapped me.

I'll contact cardiac rehab to see if they can take me back -- and if there's any possibility that cardiac rehab can even help me at this point.

 

[Protimenow]

Thanks for the context, I know that the valve going bad can definitely cause heart damage and mostly it remodels and recovers post AVR but sometimes it doesn't but the downward spiral is indicative of further deterioration. Could cardiomyopathy have been caused due to the bad valve ? also is it dilated or hypertrophic cardiomyopathy

It's been 31 years since my OHS. I don't know if there was any damage before the surgery. As far as dilated or hypertrophic cardiomyopathy are concerned, I'll have to revisit the cardiac MRI that I had a few years ago at UCLA.

If I can find it (I'm using a different computer and don't have all the files) I'll see if the cardiomypathy is described further). This is definitely a downward turn - and I hope that it stops here...otherwise I'm toast (who does transplants on a person in his 70s when there are probably many younger candidates with potentially a much longer time to use the transplant?)

The Inpefa that I take stops absorption of sugar and salt by the kidneys and apparently takes some of the stress off the heart.

 

[Protimenow]

About 1 minute of looking on the web:

1.
How do you fix low ejection fraction?
Getting the appropriate amount and intensity of exercise, losing weight, quitting smoking, reducing salt or excess fluids, and eating a healthier diet are some of the recommendations for improving low EF.

2. A low number can be serious. If your ejection fraction is 35% or below, you’re at high risk of developing a dangerous arrhythmia or even heart failure.

My electrocardiologist said I was in heart failure - but I'm not exhibiting edema or any of the 'telltale' signs of CHF.

I have a pacemaker/defibrillator that is supposed to shock my heart if I get a persistent arrhythmia.

Yes, I looked on the web, too. I was looking to see if anyone here had firsthand experience living with a low EF.

 

[V__]

This is definitely a downward turn - and I hope that it stops here...otherwise I'm toast (who does transplants on a person in his 70s when there are probably many younger candidates with potentially a much longer time to use the transplant?)

FWIW, my understanding is that there are implantable devices that may help the heart in case of cardiac failure. But whether they are applicable or not is probably a question to cardiologist.

 

[V__]

AV replacement, MV repair, PFO closure, and bypass - busy day for all

Looks like a very extensive surgery. Just out of sheer curiosity, how long did it take?

 

[Protimenow]

My ejection fraction fell from about 45-50% to about 30% after my heart surgery 3 years ago (AV replacement, MV repair, PFO closure, and bypass - busy day for all). The surgeon and cardiologists could not provide a reason for the decline. Regardless, my cardiologist prescribed Entresto (49/51 mg), metoprolol, and implanted a defibrillator. I was pretty active before the surgery and continued to exercise routinely after. I do get breathless and have had an episode or two of ventricular fibrillation (stopped before the defibrillator had to do anything). Four years hence, my ejection fraction has recovered to about 50% based on my 2023 echocardiogram (I'll feel a bit more confident after getting a confirmatory result from next year's echo). I believe that this is due to the continued exercise and Entresto.

Entresto is a pretty expensive medication. Before joining Medicare, I was able to get co-pay support through Novartis which made the prescription very affordable. On Medicare, I rely on my Part C prescription drug plan which helps a lot, but, I still fall into the "donut hole" mid-way through the year and have to pay an increased amount. I see that Inpefa also has a co-pay program. This may be available to you if you are not on Medicare. Co-pay support was definitely worth pursuing before I joined Medicare.

Good luck with the Inpefa. I hope it does it's thing and reverses the decline in ejection fraction.

Inpefa has programs - they start with 30 days free.
I have Medicare Part D - and have probably already hit my donut hole for the year (I've been taking Farxiga), so I don't know what I'll have to pay or how much they'll cover.
I may try to convince the manufacturer to give me a discount based on financial conditions.

I'll see if I can get back into Cardiac Rehab - this might help me to increase my endurance (and it would be great if it will help increase my ejection fraction). I hate being so damned weak.

Inpefa doesn't increase EF, it just supposedly puts less stress on the heart. I'll see.

 

[pellicle]

Hey @Protimenow
I've not commented on this thread because its outside my area of experience / knowledge.

I'll see if I can get back into Cardiac Rehab - this might help me to increase my endurance (and it would be great if it will help increase my ejection fraction). I hate being so damned weak.

So I just want to say that I hope you get to the bottom of it and I hope this helps.

 

[Protimenow]

Thanks Pellicle. And I appreciate your restraint, There are many on other forums (fora?) who have no knowledge/experience who jump in anyway -- as you well know.

 

[pellicle]

There are many on other forums (fora?) who have no knowledge/experience who jump in anyway

well now that you've mentioned this, I should say that you should try some Glycyrrhiza uralensis which is known to be a potent herb in Chinese medicine. I suspect in combination with some Mongolian Astragalus propinquus and a full Chakra cleanse that you'll be well on the way to starting recovery

I hope that this is the female chart ... but either way, don't forget

;-)

 

[KenH]

Looks like a very extensive surgery. Just out of sheer curiosity, how long did it take?

I believe it was 4-5 hours with a couple of surgeons working on me at one point (from what I was told).

 

[V__]

I believe it was 4-5 hours with a couple of surgeons working on me at one point (from what I was told).

Thanks! It seems quite a lot. I remember seeing statements that they don't want to exceed 5 hours due to the impact from the heart-lung machine usage. It's nice that you had 2 surgeons. Ideally they had different sub-specialties.