Suky2

[Suky2]

Hello, my husband had a heart attack 22 years ago he recovered really well and was walking with a friend doing 5 miles or so every week. 3 years ago he had a stroke. Again he recovered well but could not walk more than a couple of miles. His ejection fraction was about 25%. Towards the end of 2022 he had an ICD fitted and the heart failure nurse increased his ramipril to full does with the intention of putting him on entresto. He had an echocardiogram (this year) in January 2023. We didn't find out the result until November. The ejection fraction had gone up to 31%. In February 2023 the heart failure nurse put him on entresto half dose. Within a month he was put on full dose of entresto. Since then he has become more and more tired. He has no energy and can only walk about 100 yards without stopping. He has difficulty breathing. I don't know if this is connected to the entresto. We have spoken to the heart failure nurse about my concerns but she is sure it is not the entresto. She thinks it is a natural decline in his heart. Does anyone have any negative experiences of entreaties or any advice please?

[Maxbar]

can you not get to see a cardiologist to help explain things to you both , wishing you good luck and good health 👍

[Suky2 in reply to Maxbar]

Thank you so much for your reply. We have spoken to the heart failure nurse and she does not believe it is the entresto drug. She says she thinks it is just deterioration of his heart. I find this difficult to accept as he had an ICD fitted September 2022 and was fine. He only started deteriorating a few weeks after starting on the drug entresto in March this year. He started the entresto in February. She may well be right but I feel I can't leave any stone unturned. I believe it is a fantastic drug and is really beneficial to most people taking it. I am just concerned that my husband might be that one in 1000 or so that has a really negative reaction. Thank you so much for taking the time to reply

[Lynxmygingerb in reply to Suky2]

Hi, I had a HA in April and had 1 stent fitted. 9 weeks later I had another one and had 3 stents fitted. I was put on the max dose of Entresto but it severely disrupted my kidney function. After a couple of weeks I was put on half the dose and that has been fine. However going on Entresto was to replace the maximum dose of Ramipril that I was taking. I as seeing the HF Nurse next Tuesday to discuss going back on to the higher dose. I am having an ICD fitted in February. Wishing you all the best.

[Suky2 in reply to Lynxmygingerb]

Hello Lynxmygingerb, thank you for your reply. I hope.your ICD fitting goes well. My husband had his ICD fitted September 2022 and it was fine. Its only sinc goi on entresto that he started havin problems (in my opion )Happy and healthy new year to you

[Lezzers]

Do you/ your husband monitor his blood pressure? A lot of people cannot tolerate the top dose of Entresto because it lowers their BP too much, my husband is on the lowest dose because his BP is too low to increase it. Also, does he/you monitor his weight regularly? Retaining fluid can cause breathlessness, lack of energy etc. My husband has to monitor his weight daily due to fluid retention which has proven difficult to remove, we've noticed he's definitely more breathless & less able to do things when he's carrying more fluid than usual.

His nurse may be right though, it could be a case of his heart deteriorating, your husband's story is very similar to my husband & unfortunately his heart has deteriorated quite badly this year. You could ask if they could do a NT-pro-BNP blood test as this would be able to indicate if his heart function has reduced & whether further investigation is needed.

Good luck, please let me know if there's anything else I could help with, sadly I'm well informed with heart failure & symptoms etc!

[Suky2 in reply to Lezzers]

Hello lezzers thank you so much for your reply. My husband hasn't put on weight but we haven't been monitoring his blood pressure. We'll certainly start doing that.I hope this year proves a happy one for you and your hubby.

[pauljusa in reply to Suky2]

Hi Suky, lezzers gave you some great advice. I'm on the full dose of entresto and I'm doing great. I record my BP and weight daily and submit it to my doc periodically for his review. I started on the quarter dose and it was gradually increased. While they were adjusting the dose I had blood tests every two weeks until I'd been on the full dose for a while. I also had a NT-pro-BNP blood test recently to confirm that my heart wasn't being damaged by the medication or my improved exercise capacity, it was fine , which was very reassuring. Did your husband have any bloodwork?

Very best wishes to you and yours for a great new year.