My husband was diagnosed in January 2020 with Hf. He is on all the tablets, dapa and entresto and others and is lucky that he can still work. He says he has never felt ill he just was holding a lot of fluid. He has had scans and the cardiologist called him in June to say they needed another scan as his was inconclusive. We are still waiting for this. I don’t understand the difference in the terminology of what hf is. Sorry if this sounds a little stupid but My head is all over the place.
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Battie
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"Heart failure" is a terrible term. It just means his heart isn't quite as efficient as it ought to be, not that it is failing.I was diagnosed with severe HF in Oct 2019, but am getting on OK. Entresto does seem to be a wonder drug for many of us. I suppose it depends on the original cause of the problem.
Whatever you do don't try googling it. Have a look at the info on the main BHF website.
I agree totally. It’s a lonely place at times. My husband could do a lot better in terms of helping himself and there must be other people out there that could do with a place to talk.
I agree that Heart Failure is a horrible, scary term. I was diognosed eight years ago and so far it’s been okay. Unfortunately I started Googling my condition a few months ago and gave myself a real fright! After a few days I wrote down all my questions and worries and went to my doctor and cardiologist with my concerns. They reassured me and made me realise we are all different and there is an awful lot we can do to help ourselves and empower ourselves. The difference between someone taking their meds, exercising and eating well and someone who smokes, sits on their bum all day and forgets to take their meds is huge- we do have some control in what happens next. Xx
Hello, I know exactly how you feel, I have lived with HF for 15 months now and awaiting a follow up with the consultant (that being said with the meds/drinking and eating well and exercise I feel OK and therefore the wait doesn't worry me).
Your husband is in good hands, has he got a specialist heart nurse and has he been referred to cardio rehab yet? (if not ask as it is very good and would be worthwhile).
There is one good site you should visit and that is Pumping Marvellous pumpingmarvellous.org/ (sorry I don't how to link it so you can just click it), this is a charity just for heart failure patients.
What i would recommend is under the news section is scroll and read the 'Living well with heart failure' report 2022 - it is another thing I can relate to and found very uplifting.
Finally you have come to the right place for support.
Thank you, he is now back under his gp but we haven’t had any blood test for a few months. Unfortunately my husband tends to stick his head in the sand which infuriates me. I just need to relax and stop watching him. Thank you again for your reply.
Thank you. In himself he is good and I’m on pumping marvellous site. If I’m totally honest he could do more to help himself. He likes a drink and he has cut down but not enough for me. Baby steps I suppose. Thank you again and take care
Hi, I too was shocked when given the HF news but eventually found a nurse on the ward who also didn't like the use of the term HF and preferred to see it as reduced level of heart efficiency. She said "simply put its like most of the rest of our bodies parts they , through wear and tear, become less efficient and don't work to the same level or capacity" and that mine had slowed down a bit in its pumping level but was still working away. " I found her explanation of it less worrying and as she also said, now that they were aware of it they could help the hearts function with a combination of meds and lifestyle/diet changes. Hope the info and support you're getting on the site helps as it can't be easy for you. Take care.
Hi Battie, HF is terrible terminology, it can mean many things. In my case I had severe HF after catching a virus, not the one we dare not mention on here. I too was holding water around my lungs and heart. I was blue lighted into the LGI back in Dec 2020. Heart rate was through the roof around the 200 mark when they got here. All due to my heart not pumping well.I was In Hospital for a week, came out with a diagnosis of dilated cardiomyopathy,AF and severe left ventricular systolic dysfunction.
Long story short here I am now two years later, just had my bi annual mot, been told my heart has remodelled, pumping in the normal range, 60%EF, from 10-17.5% EF when I went in and the consultant telling me that it’s really brilliant and hopefully in a further 6 months will go onto just a maintenance regime for my medication to keep my LV function up.
HF is a terrible term but I’m sure others will be on soon to inform you that it’s a term that really tells you that your heart is not pumping as well as it should.
The drugs, rehab, diet changes and exercise plus a cardioversion in March to get rid of my AF, has done wonders for me.
It depends also what caused the HF but it can be reversed.
Do not Google it , it will frighten you. Dr Google needs striking off. The stats they have are a nonsense and way out of date.
Hi. Hf is an awful term and RufusScamp gives a good explanation of what it actually means. I was told I had hf in March 22 and thought it meant that I was going to die within 5 years. It terrified me and my family and Dr Google did his worst. I had to wait months to see someone after initially being told over the phone. Those months of waiting were horrendous. I’ve now been told that if the meds work (entresto, Dapagliflozin, bisoprolol etc etc) I might be out of hf by the end of the year. I didn’t realise that was a possibility and it gives me hope.
I’ve now had heart problems for about a year, I’m 51. My husband has been worried sick and it was really terrible for him. I nearly died in January from endocarditis and he went through a period of grieving for me while I was still alive. The infection left me with hf. Our worlds have changed so much in the last year and it’s been as hard for him to adjust as it has for me. He has just recently finished counselling and is taking meds but it’s been very difficult for him. As much as I try to be independent the reality is that I sometimes need help and, in the absence of any level of social care, it falls on my family. There are organisations that support carers and they might be able to help or speak to your gp. Keep talking to each other and don’t forget to look after yourself too.
Heart Failure as a phrase scared the life out of me. Almost literally. It should be called "the heart is failing to work quite as well as it should". Much better but admittedly less catchy.
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