The joys of knowing what your EF is !

[bones-bones]

I have severe + heart failure with an EF of 20%. This has gone down steadily since I had Chemo. for breast cancer in 2018. I take Carvedilol, Dapagliflozin, Frusemide and a low dose of Entresto. I think there is another but I can’t remember what it is at the moment ! I religiously swallow them all.

I really don’t have any symptoms of heart failure apart from fatigue and lymphodoema in my legs.The drugs lower my BP but it goes up again after I drink lots of fluids.

Any advice re how long my heart can keep going with this low EF ? It does spook me from time to time….I know this isn’t helpful but there we go.

Thanks for listening. Have a jolly Christmas.

[PinkKizzie]

Hi bones-bones, when it was discovered my EF was 25% I was immediately prescribed Carvedilol, Empagliflozin, Furosemide and Entresto which my consultant said would keep my heart stable. I was advised to have a pacemaker implant, however, it didn't go to plan (please read my bio). I won't try again for a pacemaker. I'm not due another Echo until May next year so I won't know if my EF has improved or otherwise. I also have LBBB and LV impairment. Has a pacemaker been suggested to you? I feel really well, but like you I suffer fatigue and breathlessness from time to time. This forum is really good and it makes you realise you are not alone. Take care.

[bones-bones in reply to PinkKizzie]

Thank you Pink Kizzie

I also have LBBB, and LV impairment. I have no lymph nodes under my arms ( ca breast x2 over the years ) so after much discussion the experts decided that I shouldn’t have the mini defibrillator embedded because of the risks involved.

Cardiology don’t want to see me again so that seems to be it. I don’t feel ‘really well’…….I am 81 so I’ve had a good go at it so as they say ‘I can’t complain’. (But I do !)

I hope your Echo is improving. Yes it’s good to know you are among understanding friends.

Have a good Christmas..🎄 Liz

[PinkKizzie in reply to bones-bones]

Thank you for response Liz, if you ever feel down, please message me. I'm disappointed your Cardiology says you can't complain at 81, it shouldn't matter what age you are. My only concern is I sometimes think what will happen if I take unwell through the night as I live alone. My daughter makes me take the key out of my front door so she can gain entry if I am unwell during the night lol. Wishing you a lovely Christmas and all the best for the new year.🫂

[Herman7275]

Well Not sure how much I can help You, but I have taken Carvedilol for about 4 or 5 years and it seem to keep me right where I need to be. I only take this for my heart & bp.+ It seems to not be a harming drug as they have kept me on it for some time. I also take hydrochlorothiazide. I do take the Carvedilol twice a day, morning & bedtime. My wife has same issures with her legs. I hope I have helped you. If more questions, write me again. Ron

[Loobycare in reply to Herman7275]

Re: being alone at home during the night. I live in Scotland and for a few pounds a month my local council provides me with a community alarm system whereby I can press a button if I feel unwell through the night and the person at the other end will contact my next of kin and emergency services, if needed. My son always tells me to leave my key out of the lock so he can enter the house, without breaking open the door!

It may be worth you contacting your local council to see if there is a similar scheme in your area.

[PinkKizzie in reply to Loobycare]

Hi Loobycare, re: your post to Herman7275, I'm in Scotland too, might check your suggestion, sounds a good plan. Take care.

[bones-bones in reply to Herman7275]

Thank you Ron. I find Carvedilol easy to take. My BP is usually ok but quite often low. With most of these drugs aiming to bring your numbers down I’m not surprised !

The swollen legs are a nuisance. I take Frusemide plus Potassium . I try to raise my legs up but it isn’t always convenient. I do my best. What is Hydrochlorithiazide for ?

Liz

[Herman7275 in reply to bones-bones]

Another bp pill but diuretic is a water pill ,I believe what its called !!

[Herman7275]

Well I recently got married 2nd time and have a fantastic wife here to take care of my needs. But I know before I married being alone can be scary. Thankyou for the reply!! Ron

[Blackknight57]

mine was 25% post stents . 18 month down the line 38% . Been out forward for a icd (October 7th) Still waiting for Papworth appointment