Hi, I’ve often been on here helping others with heart related issues but now I find myself the patient,
Much to my amazement I have just been diagnosed with Heart Failure. So far, things are moving quite quickly; tomorrow I have an appointment for an Echocardiogram and in a couple of weeks time I have a cardiologist appointment, so I certainly can’t complain. I must admit I’m a little apprehensive about the future as I’m a very determined sort of person and don’t want to loose my independence. I’ve been through so much in the last few years and I just feel this is the last nail in my coffin. Anyone else with Heart Failure that can give me a few tips?
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Rosie1066
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I have just read your bio and I am so sorry that you’re having yet more issues. I hope that your appointment with your cardiologist gives you some positive news. Like you I lost my husband to multiple strokes in 2022. These strokes left him with dementia like symptoms. So the last 5 months of his life were very difficult.
I had my Aortic valve replaced and a bypass done 9 years ago, (my valve is tissue ). I was the poorly one he was as fit as a flea!
We do, sometimes life just kicks us in the teeth! But you seem like a fighter, my husband used to say to me when I was a bit down.” Onward and upwards” so we think positively. I am so very grateful to the medical staff that gave me a chance to live and see my grandchildren thrive, I am sure you will find the inner strength to face this new hurdle? Onwards!
My husband was told he was in heart failure last year after an echo showed his ef as 35%.
He had a cardiac arrest 2 years previously and when he left hospital after only a week his ef was 45%. He had no symptoms and was feeling fine, just had the echo as a check up, so was totally floored by the heart failure diagnosis.
Anyway, he decided that the heart is a muscle so if he did some more cardio exercise it might help, so was on the exercise bike for 20 minutes most days as well as working full time where he is on his feet all day - easily does his 10000 steps. Had another echo a few months later and back up to 45%.
They did introduce one new drug (Eplerenome) in addition to the usual cocktail after a heart attack/cardiac arrest, but is feeling absolutely fine and still no symptoms over a year after the diagnosis.
I wish they would change the name from heart failure, as I feel it is such a horrible and scary term to use and there are many people on this forum with no symptoms and doing well, so keep your chin up and try to live as normally as you can xx
I’m so glad to hear your husband is doing well. I was shocked when I got the diagnosis as I’m also on my feet all day, normally gardening or going for long walks with my daughter and her dogs and hardly ever sit down watching t.v. until late in the evening.
And yes,the title Heart Failure should be changed. By family are already eyeing up what they want when I kick the bucket! No, only joking.
Good morning Rosie, please don't go into panic mode about your diagnosis. I know you've had lots to cope with but the term heart failure makes it all seem more doom and gloom and as so many people have said before, it should be renamed. I like to think of mine as a heart inefficiency... it's not working to it's full potential and needs a bit of help. I am fairly lucky and though my EF isn't the best, I have few symptoms but obviously medication helps with this. If I over exert I get a bit breathless but generally, I feel well on a daily basis. I would say exercise...as much as you are able to do, is really important and is something I do daily...it's a must for me. I follow a heart healthy diet and just basically try not to worry about my diagnosis. I did at first and was so upset but soon realised that feeling like that was of no benefit to me and now I don't really think about it too much and lead as normal a life as I can understand the circumstances. If you ever want to pm me, please feel free to do so. I know being a regular person on the forum that you will get lots of support and suggestions from others dealing with their diagnosis and I hope it will settle your mind a little. Take care xx
I feel your worry but I was knocked for 6 when I was first diagnosed but I've just got on with life and kept things as normal as possible. There have been blips along the way (just in one now !) But overall just keep moving and doing and don't let it get you down. Your heart's not going to stop but it's not working at optimum levels which makes life a little bit more difficult at times. Rest when you need to is the key. Let us know how you are here and keep in touchx
I also think think heart failure is not a helpful term. My local heart failure team has changed its name to heart function team which makes more sense. I was extremely worried to be given an EF of 10-15% in hospital. However, a few months after treatment and with some exercise (stage 3 cardiac rehab - absolutely brilliant!) I was up to 25-30%. A few months later I was up to 47-48%. I guess what I am saying is that things can improve if you follow the advice and take the medication.
That’s great news that your EF has gone up so well. I don’t know yet what my EF is as mine has been measured on the BNP scale and it comes out at a level BNP1400. I am having an Echocardiogram this afternoon so hopefully will know more later.
I had HF and pneumonia together last year, as my heart was not working well it was not getting rid of the liquids I had built up in my legs and stomach, my weight had ballooned to 96.3Kg. I was put on diuretics and the liquids in and out measured daily while I was in hospital , in 5 days I dropped 5 Kg.
You will get some medication to help the EF, after that just exercise, eat healthily and build up you strength. And I am sure you will be able to live with the condition. Good luck.
Yes, weight is my problem. I’ve put on three kilos in a week whilst watching my weight, as I always do. I’m hoping they will give me diuretics. Yes, I’m still doing cardiac rehab and I have been told it’s OK for me to continue, so plenty of exercise.
it is scary when they say you’re in heart failure. I’ve been monitored for 18 months now and that term wasn’t used by cardiology. Then a few months ago I needed an urgent pulmonary angiogram, the pulmonary consultant casually said my lungs were clear but that I was in heart failure and it really scared me for a few weeks. Then I thought, well nothing has changed and my heart condition is being monitored, she just called it something different and I’ve tried not to worry.
You’re having the testing, it’s easier said than done but worrying won’t make things better but you’re in safe hands, the cardiologists have got this, relax xx
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