maybe I shouldn’t ask questions

[Anon2023]

hi. I’ve just been for my annual echocardiogram this morning. I had a nuclear perfusion scan last month to measure my ejection fraction and was told that it had increased from 44 to 53%. The cardiologist was very happy with the result. This morning I made the mistake of asking the echo technician what my EF was and was told it was about 44%. I’m absolutely gutted as I’ve been on the highest dose of entresto, dapa and spirolactone for the last 8 months. I know that 44% isn’t too bad but it makes me wonder where I go now as I’m already on the highest dose of the “wonder drugs”. Feeling a bit sorry for myself as it feels that things are now going backwards. Anyone had a similar experience?

[Anon2023]

hi. That’s very reassuring, thanks. I know that EF is just one indicator but i was so disappointed this morning to think that I was back where I started. You always inspire me with your achievements and I look forward to your posts. It helps me to believe that positive changes can happen. Thanks again for replying, I appreciate it.

[Hidden]

Hello

I am not going through what you are but I can relate to that feeling of taking one step forward and 10 back it is all I seem to do and yes that feeling of been gutted really gets to you

You are right to ask questions the best way at least you know but I would wait and see what the Consultant says or who ever is caring for you they will always have some kind of solution so try not to worry to much and the 44% as you say was not to bad so think it could have been better but lucky as it could have been worse

Let us know how you get on x

[Anon2023 in reply to Hidden]

hi. Thank you for replying. I really appreciate it and I’m so grateful that you made the decision to stay on this forum. My health anxiety is in full bloom at the moment but I’m trying to focus on the positives. The report from today will take weeks to generate and I need to try and put it in the back of my mind, if I can. I’ve got a tendency to cling onto any negative words that health professionals say and ruminate on them. Even though I’ve had many hours of counselling etc I still really struggle with it.

I hope everything is ok with you. I’ve been abroad for a while without WiFi so haven’t been on the site. Really pleased that you are back. Xx

[Hidden in reply to Anon2023]

Hello

How lovely you have been abroad I hope you had a nice time

I totally get what you are saying when any professionals Doctors etc talk to me I just pick anything negative like my brain is a magnet and they stick to it and then it goes round and round but somehow we have to try and remember the positives it is hard I know

I am struggling with so many things at the moment and my brain is ready to burst

I often wished I could be one of these that can cope and not let things bother them and like you I have been through every therapy out there but still I am the same and it is not for the lack of trying because this is so exhausting isn't it

You are going to be alright though honestly you will and we are here when you need us to x

[Anon2023 in reply to Hidden]

hi. Thank you so much for your reply. I’m sorry that you are dealing with so much at the moment and I just hope you get some respite soon. I don’t think the talking therapies that I’ve done work for me either but it’s all that’s on offer. I’m sure we will both be ok but it’s exhausting to be constantly worried and stressed. Xx

[Hidden in reply to Anon2023]

Hello

You are right it is exhausting no one knows unless they suffer but hopefully you never know we just have to keep trying x

[Lezzers]

Hey I get it, it is just a number but when it's yourself that's affected, its scary! First, do you feel any different, are your symptoms any worse, problem not? My husband is on Entresto, albeit the lowest dose, & his EF has dropped a lot! But from what I understand about Entresto is it's the long term benefits that are the most important, it's looking after your heart & hopefully will continue looking after it for some years. Having said that my husband was previously on candesartan, his EF went from 30 to 35 & then 51! So if Entresto doesn't work for you there are other possible options out there. Sadly this whole EF business is such a roller coaster of emotions!

[Anon2023 in reply to Lezzers]

hi. Thanks for replying. I think I was just disappointed that my EF appeared to have dropped even though I’m taking so much medication and was told only last month that it had increased. Maybe, as other people have suggested, it’s the margin of error between scans. The tech who did the scan kept talking about my heart attack even though I’ve never had one and told him so. I don’t feel any worse and have spent the last month on holiday abroad. I’ve got horrendous health anxiety and every check up tends to floor me despite hours of counselling etc. I hope you and your husband are doing well now. Thanks again for replying, it’s very kind of you. X

[Hidden in reply to Anon2023]

I wouldn't take the techs word for it as its ultimately the cardiologists perspective that matters.

With entresto my ef increased when on the lower dose from 12% to 44% but this was probably also due to a cardioversion that reset afib. Since they increased my dose to the middle dose, it has now dropped down to about 40% so not sure whats going on. I have always thought the entresto is the only thing causing me symptoms. Seemed to be after taking the drug on the morning. Brain fog fatigue, pains, feeling aniexity and drowsy. So not sure.On the dapa for 3 weeks now so hopefully see some improvements.

[am1875 in reply to Anon2023]

Hi. I understand the disappointment but has Entresto helped anymore? If 44 is baseline, isn’t that a good starting point to carry on? All the best.

[am1875 in reply to Lezzers]

Hi. With the success with Candesartan in regards to ef, why would they switch to Entresto? How did your husband feel on Candesartan? Cheers!

[Anon2023]

The cardiologist wrote to me a few weeks ago after the perfusion scan saying how positive it was. I’ll hold out for his letter following this mornings scan. I’ve been lucky that the entresto and Dapa havent really caused me any side effects and I haven’t got any significant symptoms of heart failure other than fatigue. I do have occasional brain fog but I thought that was just the ageing process. I hope that the side effects that you are experiencing ease off soon and that you see some progress with dapa.

[Hidden in reply to Anon2023]

Yeah hopefully its good news for you. Like others have said there are alternatives and even with Entresto, there probably is another 'miracle' drug just around the corner. There probably already is near enough cures to this condition but that would bankrupt these big pharma companies for sure but that's another topic.

[Anon2023 in reply to Hidden]

I’m sure you are right. I just feel like my body is slowly shutting down on me but I guess that’s inevitable for all of us one day. It just feels very scary when a couple of years ago I was totally oblivious to my heart problems. Sometimes I do wonder if it’s best not to know!! 😹

[Hidden in reply to Anon2023]

I know exactly how you feel. I really do. At such a young age too. really doesn't seem fair. I was super fit, young family, good career etc etc. It sucks! Each day is a struggle, mentally to come to terms with it and then the sides and random chest pains or palpitations, or waking up with heart burn and anxiety kicks in and im running to the toilet, sweating, mobile in hand with 999 typed in, ready to call for a lift to the cemetery, sorry, hospital. Yes just a daily reminder. The heart saying. 'hello, i'm here. i haven't forgot about you' and the thoughts that one day the lights will probably turn off instantly, making me hope itll be in my sleep. but you are right, it comes to us all. people are ran over on a daily basis, car accidents, diagnosed with cancer etc etc so i guess we have to just accept it, and power on. x

[Anon2023 in reply to Hidden]

I have to say that I wouldn’t wish any of this upon my worst enemy. You are younger than me and I can only imagine how cheated you feel. I know that we are all meant to feel grateful to be alive but it’s hard living with the feeling that the sword of damocles hanging over us . I’m just trying to get myself into the frame of mind that if I’ve only got a few years left I might as well enjoy it. I find it very hard to think like that though because of my husband and kids, I really worry about them. Like you say, nobody knows how long they’ve got but quality of life is just as important as longevity. X

[Hidden in reply to Anon2023]

a few years? Is that by your estimates or the cardiologist? This is one of the things that bugs me, is not knowing. I know thats just life but when we have a condition like this it would be nice to know how long is left. The cardio just doesnt know with me.

[Anon2023]

hi. Sorry, that was my estimate. They won’t give me a prognosis and are evasive. Even when I was in hospital very poorly with endocarditis all they would tell me was that I was stable although they let my husband and kids in for “end of life” visits. I managed to beat endocarditis but it scarred my heart causing heart failure. All they will, or can, tell me is that my condition is stable at the moment. I’ve been a bit maudlin today so my apologies, I’m still recovering from jet lag and feeling very sorry for myself x