I posted a few months ago after being diagnosed with heart failure in April,its been a very anxious few months,I was told on my appointment that I would be referred to the local heart failure clinic,I did not hear anything from them so I phoned them and was told I did not meet the criteria, because my ef was 42 and they only see patients with ef of 40 and under,so was left to get on with things, I have not had a good night's sleep since my diagnosis, worrying if I'm going to wake up the next morning,I was put on dapagloflazin one a day,also caravagilol 3.25 for a few weeks then 6.25 for the past few months,apart from feeling a little tired I'm coping OK,iv taken up walking every day only half hour, I'm just so worried how long I have left,I have a follow up echocardiogramm and cardiologist appointment tomorrow, hoping my ef might have improved,please don't think I am feeling sorry for myself,I just feel as though iv been given my diagnosis and sent home to get on with it,so I am reaching out to all you caring people for some advice please.best wishes to you all.
Heart failure: I posted a few months... - British Heart Fou...
Heart failure
hi Holly, really sorry that you are going through this and understand it will be an anxious time for you. Hopefully having the echocardiogram and review with the cardiologist will give you that you need and a pathway forward. What I would say is that been through similar anxiety following heart failure last year and surgery this is the worst time and I am sure they will make the right decision for you. Please let us know how you get on today and wish you all the very best.
we have all been there Hollyann and so we understand how you feel. I am speaking to you from a week long holiday in Germany where I have walked for hours ( sometimes with cramps and breathlessness) and had a brilliant time. Four years ago I had all of your fears. This is all new to you, take your meds, if you feel that you need to see the doctor be pro active and ask, believe that you will learn to negotiate your new life, accept your limits and still enjoy things. This group is wonderful for helping to keep you informed and for support. You will be able to go forth and be fabulous! Much love x
Heart failure isn't a diagnosis just means your heart isn't working as it should. By having the echocardiogram and seeing the cardiologist will beable to diagnose what is wrong with your heart. Or you may need a bubble echocardiogram which doesn't hurt and MRI on your heart . I had all those tests and found out I was born with a small hole in the side of my heart 2020/2021. On Flecainide and Apixaban and have PAF . When the PAF kicks it I just sit and do my pre natal breathing exercises and it's soon over.
I had to laugh when my cardiologist told me about the hole as I have had 3 major operations and 2 minor ones all with a dicky heart and no one knew. I am 66 and keep as active as I can mind and body .I was also born disabled but only had my diagnosis of what I was born with in 2022 and it's rare . Only by my neurologist having my whole genome genetically tested that I found out . As it's a mutant gene in my brain receptors.
Hope you get your diagnosis and treatment you need but don't worry if you need further tests ..
You really mustn’t worry Hollyann. I was a healthy 65 year old attending 8 gym classes a week when after a breathless period, I was diagnosed with heart failure with a EF of 21%. I have now been on 6 different medications for 5 months and my EF is 28%. It is not expected to increase as my blood pressure is so low they can not increase my meds. I enjoy my life, walk every day, sometimes 4 miles, have a good social life and NEVER have worried I won’t wake up the next day. Try and see your GP for a chat but really an EF of 42% is ok.
First things first, your LVEF isn’t that low…yet. It does degrade over time for everyone. From what you’ve said, you’re in no immediate danger.
You’re seeing a cardiologist and getting (presumably) regular echos, so you are being managed. If it were more serious, the cardiologist would do more. Keep up the walking and try to raise your heart rate a bit when you do.
I was diagnosed with heart failure 5 years ago. I’m 63 now. I don’t know what my unaided LVEF was, but after being put on bisolprolol it was 46%. Dapagliflozin was added last year and it has risen to 55%. The bisolprolol makes be feel tired and dopey, but the dapagliflozin came with no additional side effects. I do lots of walking and even do some jogging and fairly hard cycling for up to an hour, getting my heart rate up to maybe 145 at the peak.
Hopefully your LVEF is up nicely now. Note that the drugs aren’t fixing things, they are merely protecting your heart. Don’t let a little thing like heart failure stop you enjoying yourself. It’s a pain in the backside having it, but you can live a pretty normal life for many years.
hi Holly, my 44 year old brother in law who had heart failure he,s diabetic and autistic and lives with us, basic daily things we do for him is weight every day and recorded any loss or gain over 3/4 days we must report to gp and swelling of hands or feet, as he dosn,t tell us if he dosn,t feel well, my husband is 51, he has just had a quadruply valve graft, because they mis diagnosed for 4 years thinking he had acid reflux, they both walk every day but stop if hubby thinks too much only 6 weeks since his op, but my brother in law lives a good life, know your limits, relax and good luck with your appointments, xxx
on top of the wonderful advice you’ve been given here. My mother was given a similar diagnosis to yours at age 78 (the age I am now) and lived a further fifteen years - and was going for a brisk walk every day for the first ten of these.
So, what can you do to help yourself? Have a look on the website of British Heart Foundation for diet and exercise advice and see if you can tweak anything for the better. You will then feel in control of what’s going on.
Hi Holly I’m sorry to hear what you’re going through.
I was diagnosed 21 yrs ago with an EF of 43%. Things were a lot better then. I also have various arrhythmias so I was seeing an EP. I don’t think I saw anyone to do with heart failure until years later because my arrhythmias were causing my heart to fail more and I ended up with an Avnode ablation and a 3 lead device fitted.
Now I see a heart failure doctor every 6 months but I don’t have a nurse. I stopped seeing a nurse 6 yrs ago when my device was changed to add a defibrillator and I was moved to the main hospital due to my heart function dropping to 10%. Last year it was 23%. Im not sure what it is now. I have Dilated cardiomyopathy which is now progressive.
All I can say to you is the medications that are given for H/F are very good compared to when I was diagnosed. For a long time I was just on blood pressure tablets to keep it low. It’s only 6 yrs ago the cocktail was added. I have been on the entresto trial and I’m about to trial another one which hopefully will help others in the future. Im sure they will continue to keep an eye on your EF.
When you see your cardiologist make sure you write down a list of questions to ask them, and if you can, take someone with you. Mention also you’re scared and anxious about the diagnosis. It’s normal to feel like that. Let us know how you get on. All the best.
I was diagnosed with leaky valves about 20 years ago. They said I'd need surgery at some point, but not yet, and sent me home. To be honest, for the first couple of years I found this a bit difficult and just wanted to get it over with and get on with things. But that feeling wore off over time and I ended up getting another 18 years out of my dodgy valves before having to have them spruced up. (Well, they spruced up my mitral valve anyway. They binned my aortic valve and gave me a shiny new one.)
Your EF may well have improved on the drugs; but even at 42% that's really not too bad. Hang in there; some of this just takes time to adjust.
I had quintuple bypass surgery in 1999. For the next 20 years my Ejection fraction was 40%. Every echo and stress test showed the same result of 40%. I did not change my routine or lifestyle at all, continued with a regular exercise program and normal diet. "Heart failure" is a terrible term, so misleading. It is not a death sentence, just a warning that your heart is less than perfectly healthy. In 2022 my EF dropped to 30%. I was prescribed Entresto and started a more strenuous exercise program. My most recent echo showed an improvement to 50%. Work at your rehab and keep a positive attitude. Your EF can be improved.
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