EF not improving even with medication

[Daisypoppet]

Hi all

I had an echo last June which showed EF at 35%, dilated LV also have LBBB. Since diagnosis been given meds, Entresto 49/51mg, Spironolactone 1/2 tablet, Nebivolol 1.25mg (1 a day), Dapagliflozin 10mg. I had another echo last week and the results came back as EF 30 - 35%!

No improvement at all, the Dr thinks its to do with LBBB and has referred me for another CMRI for June - August time.

Has anyone else had this, I really hoped things had improved from reading how amazing Entresto could be, obviously I realise one size does not fit all but still feel concerned non the less.

Also wondering if it's anything I am doing - as mad as that may sound.

If anyone has been in/or is in a similar situation would be great to hear from you.

Thank you 😀

[bones-bones]

Hello Daisypoppet. I also have a dodgy LV and LBBB so don’t worry. I’m just like you but my EF is only 20%. My drugs are similar to yours: Cardevilol , Dapagliflozin, Frusemide and the famous Entresto. I havn’t had an EF for about a year so I don’t know what EF is now but I actually feel a bit better so who knows ?

Have the Cardiologists suggested implanting a mini defibrillator. I can’t really have one as after breast cancer my lack of axilliary glands may cause problems with infection . I am 81 so havn't got much to complain about I suppose I’m sure you will be much younger than me…everyone seems to be nowadays ! So don’t worry about it too much. Heart failure is a bad way of saying your heart isn’ working as it used to. It ‘s not saying you’re it’s going to give up any time soon. Keep smiling and taking the pills !

[Daisypoppet in reply to bones-bones]

Hi Bone-bones

Thank you for your reply, not quite 81 😂 I am 55 but age doesn’t matter!

Hoping the consultant when I see him will be anle to do something. Definitely good to know that you are doing well at 81 years young.

Only got diagnosed last year so new to all this and I am a natural born worrier anyway.

You take care

[bones-bones in reply to Daisypoppet]

I am ‘a natural born worrier too ! So now there at least two of us !

[PinkKizzie]

Hi Daisypoppet, I too have LBBB and LV impairment with an EF of 25%, diagnosed in April '22. A pacemaker implant was attempted in Nov '22 but this didn't go to plan (see my bio). I can't go through that again so now only take meds, Carvedilol, Empagliflozin, Eplerenone and Furosemide. I won't know if my EF has improved until I get another echo in May when I see my consultant. I feel well, still get tired and breathless, but I keep active and have a positive attitude. I wish you well going forward, take care.

[Daisypoppet in reply to PinkKizzie]

Hi PinkKizzie

Wow my EF is high compared to some, I read your bio 😬 think I will be even more worried if I get offered a device thats my biggest dread even if it is surposed to help.

Maybe just sticking to the medication is the best thing all the time I feel reasonable well.

I agree having a positive attitude will certainly help.

You take care too thanks for taking the time to reply to me 🤗

[PinkKizzie in reply to Daisypoppet]

I need to say to you, please don't be afraid if you are advised to get a pacemaker, there is only a 1% chance of it going wrong, and I've just been unlucky. I know I would benefit from having one, but to be honest I'm not sure if I could cope with a foreign object in my body. I'm relatively slim and was told I would see it which I wouldn't like. Anyway, do keep in touch and let me know how things go.

[Daisypoppet in reply to PinkKizzie]

Hi PinkKizzie

I will go with what the consultant says, got to admit I am just scared of any medical procedure whatever it is. Like you I am reasonably slim and I know a device will be noticeable but it may just give peace of mind. Totally get your decision though

[Dubman1972]

Hi there I'm pretty similar to you ... I'm 52 and diagnosed last year with a EF of 35% .... I was put on entresto and have made it to the highest dose ... I then had a echo in January and that has stayed the same no change ... at first I was gutted but then like you say we are all different... I'm now waiting for an appointment with the cardiologist to discuss having a ICD implanted ...

[Daisypoppet in reply to Dubman1972]

Hi

I am seeing the cardiologist soon, from his previous consultation he mention Ablation /ICD. Looking at the success rate of an ablation in a funny kind of way hoping its the device as I don't want both if it can be avoided. Preferably neither would be even better 😆

Hope you get an appointment soon, I find the hardest thing is the waiting. Once you know what the treatment plan is you can get your head around it and move forward its the not knowing which is worse...

[Dubman1972 in reply to Daisypoppet]

Totally agree most of the time it's waiting ... I hope you get seen quickly and they sort it out for you ... all the best

[Sue6666]

Can I ask why a pacemaker woukd be implanted with HF as I've heard this a few times now . My heart rate goes from 40 to over 110 at times and I'm on Entresto middle dose. I also get quite dizzy if I bend forward or get up too quick. Would I be a possible candidate just to control my heart rate and stop the ups and downs?

[Daisypoppet in reply to Sue6666]

Hi sue

It also depends on the condition causing the HF. I found that bending down and getting back up made me dizzy but mine was more the beta blocker which they reduced from two a day to one a day and changed the one I was on. It has improved the symptom's a little. I have low blood pressure anyway which can cause the dizziness as well, as we know medications given reduce the blood pressure even more. All a bit of a balancing act.

My heart rate seems to ramp up to 165 - 190 if I do strenuous exercise at the gym, so now I have had to tweak what I do.

[Holtyd]

hi Sue, have you wore a heart monitor at all? As as you have said about getting dizzy when you bend forward that’s exactly the same as myself and I have a low heart rate around and after I wore my monitor they said I need a pacemaker so I’m having one next week..

[Sue6666 in reply to Holtyd]

That's interesting yes mine goes really low at times then runs away at others. No real rhyme or reason to it. I'll have to bear it in mind as it sounds helpful in the right circumstances. Thanks so much for replying x

[irishwife93]

I wouldn’t focus too much on the number and more so how you feel. Have symptoms improved? EF is the main metric they have to gauge heart function but it’s not perfect and can vary depending on how it was measured (MRI vs ultrasound) and even by the technician. My husband had an ultrasound that showed 35% EF and the technician disagreed and said it was more like 20%. So it can be wrong and yours might be higher (I’m not suggesting it’s lower like my husbands was as he felt horrendous and the 35% figure surprised us all). Don’t get disheartened, if you’re feeling well then focus on that.

[Daisypoppet in reply to irishwife93]

Hi

Thanks for your reply. No change in symptoms it seems it is remaining the same all round. I have had an MRI last year as well which showed EF around the same, due for another MRI in the summer.

[irishwife93 in reply to Daisypoppet]

Sorry to hear your symptoms haven’t improved, it might be that you need some additional meds to help the entresto! My husband was put on frusemide a diuretic and that’s helped loads as he has mild mitral valve regurgitation so the build up of fluid was occurring and not helping symptoms like breathlessness. So don’t lose hope! And staying stable is better than getting worse 🙌🏻

[Shabana1974]

Hi Daisy sorry you have not improved. Why has your doctor not increased the Entresto as your on quite a low does. I take 97mg/103mg I also take bisoprolol 3.75mg, Dapagliflozon 10mg, Aspirin 75mg, Spironolactone 25mg and mines did improve initially but my next echo is next week. Sept 2023 it was 20% EF by January 2024 it went to 32% EF.

Hope this information helps

Best wishes

Shabana

[Daisypoppet in reply to Shabana1974]

Hi Shabana

I have lower blood pressure anyway and the medication reduces your blood pressure, due to blood pressure getting too low and making me feel unwell the meds can’t be increased. I am on 1.25 of beta blocker as when another one was added in my blood pressure dropped to the low 80’s. Which is why I am staying on middle dose of Entresto.

Its all a balancing act. Glad to hear your EF improved 🤗

[Shabana1974 in reply to Daisypoppet]

Yes it's a very tight balancing act. Hopefully yours will improve soon

[djsjpa]

Hi Daisypoppet

I am the same as you with regards to my very low blood pressure (even lower than yours). I have only been able to get on to 2 pillars (bisoprolol and Spironolactone - lowest doses possible) with my HF nurse saying basically she is at a loss as what to do with me. Unwilling to try me on Entresto or Dapa as this will take my blood pressure even lower. My EF on diagnosis in September was 35% from Echo. Had my echo repeated in February and no change recorded. Due to have a MRI in a few weeks to see what is going on. I have been very concerned that this is it for me!! I also have a dodgy LV and LBBB. Luckily no real symptoms apart from slightly breathless on exercise.

[Daisypoppet in reply to djsjpa]

Hi ya

No matter what anyone says you are going to worry, but you sound like you have more or less the same as me with LBBB and LV disfunction, the consultant may suggest something when you see him. I get very breathless with some exercise now a walking up a hill well I feel like I am really old! Also have days when I feel so tired and really have to push myself, brain fog doesn't help especially when working 😬

I have been really lucky as my doctor specialises in cardiac as well and he is so helpful along with the consultant. To be honest there was such a wait for the cardiologist consultant in my area last year I decided to see one privately - best decision I made moved things along a bit quicker and he is great. When I did get an NHS appointment (which I did cancel as gone private) it was a telephone consultation, what's the use of that how can they listen to your heart etc over the phone, I do appreciate not everyone is in a position to pay for a private consultation.

Like you been referred for another CMRI, but will be seeing the consultant before that anyway.

I am sure they will find a solution for you, whatever that is as I have said before its the waiting that is the hardest thing in the meantime you constantly worry.

Lovely to hear from you, really hope you get some kind of solution soon, likewise hoping I do too.

[djsjpa]

You are very fortunate to actually see a cardiologist. I am yet to!! Only seen cardiac nurse so far with no appointment lined up for cardiologist. I am just taking one day at a time at the moment. Hills are a massive problem for me and I live in the South Wales Valley which basically is one big hill!!!

Lovely to hear from you too. Take care