Christmas Eve saw me admitted to a&e with a severe migraine (something I have suffered with since a teenager). I had all the normal ones done as well as an ECG. The ECG picked up an abnormal heart rate for someone of my age and the doctor send a letter to my GP asking to refer me for an echocardiogram. This came through and I was able to book for April.
I went to my appointment and had an echocardiogram as well as an ECG and then I met with the consultant.
I have been diagnosed with Heart Failure (at 40). This is not what I was expecting and have been in a bit of a daze since. I have been put on two lots of meds straight away with more to come. I am also now waiting for a MRI and CT scan as well as referral to the specialist heart team and to the specialist nursing team.
The consultant was brilliant when he was talking to me and gave me enough details to take on board at this initial stage. I am scared, shocked, worried, anxious about to expect in the short term and long term.
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hello welcome to the community no one wants to be part of but here we are and people with your health issue will be able to support and advice. I am sorry to hear your diagnosis but looks like they are getting into action quickly to help you which is great. I see you’ve joined today, I think a lot of us join when we get diagnosis then have tonnes of questions. There are definitely people here who can share their experiences. Didn’t want to read and run. ❤️
I’m definitely in a ‘don’t really think it’s sunk in mode’ at the moment. I think knowing there is support and others who are going through the same etc is going to be helpful.
My most recent (and worse) one was only 3 weeks ago. So I'm still recovering. I'm having a very down period at the moment so I've just made an appointment with my GP about my mental health.
This community is amazing though post on here if you need to talk or want to ask something and someone will answer.
It's quite a shock, I think we can all relate! But it's better to find out now and be treated!
This forum has been a blessing for me, it's great having the support of people who understand what you're going through... there's a lot of knowledge in the group too.
Well the heart failure bit means your heart is not pumping as well as it should...presumeable for someone of your age. The good news is the medics seem to be acting fast andyou will have a better idea quite soon as to why they are calling this heart failure. This group is very supportive and has lots of experience so you are in good hands even though we are not medics
that’s a good way to look at it - not pumping properly. My consultant today said think of it like this - a Rolls Royce car with a Ford Escort engine and that part of my heart is like the naughty kids at the back of the class - not working as hard as it should.
That's a great analogy....I like that. I think most people on here is will tell you....those two words....heart failure should be changed as they sound so scary and your consultant putting it into an easy to understand explanation speaks volumes to me. The initial diagnosis is scary but please try to remember that advances in heart knowledge and the technology that goes with it is all outstanding....so is the medication and the chances of living a fairly extended life because of all this are high. Don't start reading things on Google.....only go on recommended and reliable sources.... British heart Foundation, NHS and Pumping Marvellous. This forum is great for support and for people being in the same situation as yourself but your consultant also sounds like a person that will explain things fully to you should you not understand so never be frightened to ask. I wish you all the best in your way forward with your condition and hopefully your meds will put you back on the right track. X
Hello
How you are feeling is a natural reaction and your mind will be in total shock as this maybe was the last thing you were expecting to hear plus the words heart failure which are used as a general term for anyone that has something regarding the heart frightens you so much but there are positives here to so many do not get caught like you have and start to get the treatment they need but you have it might not seem positive at the moment but later you will realise how lucky you have been and even though 40's is young there is no reason why you will not still be here in your 80's the experts now work wonders and you are in safe hands
Let the emotions come and go the anger you might feel as we can all go through the why me part when we get this told us and take each day at a time you will get through this and someone is always about when you want to talk x
Welcome to the forum and thank you for your honest account of what you’ve experienced over the last few months.
I sympathise with how you’re feeling, I was 31 when I was diagnosed with dilated cardiomyopathy and heart failure; shock really doesn’t do the situation justice!
Looking back now, I realise my naivety when they said they thought it best I be admitted to CCU - I thought they were just being overly cautious and then was hit with the news the following morning like they were asking if I wanted sugar in my tea! 🤣
You most definitely aren’t alone and there’s something very comforting about this community and a real sense of shared togetherness. You’re in wonderful company and a great wealth of knowledge and support.
Keep us posted on how you’re doing and please reach out if you’re ever feeling unsure or overwhelmed.
Hi thereWelcome to the group. As you've already seen there are plenty of people here ready to offer support. We aren't medical professionals but we have personal experience of various heart problems together with the psychological ups and downs that go with them.
I can very much relate to the having to suddenly take on so much new information and finding yourself in a new situation. I've had to change my outlook on life which I've found challenging, but in other ways rewarding. You will find here people ready to listen.
Thank you. The shock of it is the big part at the moment I think. Some changes will need to be made I think.
Welcome to the club no one wants to be in, sorry to hear of your problem. Yes it is a shock and it's natural to feel this way. . Remember heart failure is a horrible way of explaining that the heart is not very efficient. I don't have heart failure, but my right ventrical is not very effective. This is due to my congenital issue. Now it can be confusing because I think that as my right ventrical is not normal, then it must be heart failure. But I don't have the classic symptoms. But my left side of my heart has not failed and my ejection fraction for the left side is 51 percent. Its a little low but you must remember the ejection fraction (ef) for a normal person can be classed as 50 to 60 percent. This does depend what books of information you read. However an athelet will be nearer 70 percent. Modern medication can help the heart get up to the normal figures of 50 to 60 percent. One other thing that may have to be controlled will be blood pressure, one thing that blood pressure control can help is migrains. Which I have suffered with. But one thing you must take from this is that you have been found and you are now being looked after. It will be hard and it is now a journey that none of us want. But remember the medication and technology has moved on in leaps a bounds and the cardiology departments are very good and they do talk to other doctors and specialists and even talk to other countries.
Heart failure does not mean that your heart is likely to stop beating, it just means that it's not pumping quite as it should. You can live with it to an old age for sure. I see that you have already been prescribed a few pills and they will help. I believe some people have even been cured from the so called 'heart failure'. Medics really need to find a different name for the condition as that one is scary and promotes unnecessary fear.
On my first visit to A&E I was told that my heart wasn't beating correctly and immediately I stupidly wondered if I was going to die. Here I am 18 years later leading a fairly normal life and walking our hilly coastline. I can only say that I've learn't a lot over the years about the functioning of the heart.
Hiya, you’ve had a bit of a shock to be told you have a heart condition and it’s scary . I was 47 when I found out I needed a pacemaker and took a while to get used to the idea . It’s good that you’re being referred to the drs you need to and sounds as if you’re getting good medical care already . These forums are so helpful and supportive . Take care xx
I’m sorry that you have had this diagnosis but also very glad for you . It’s horrible to find out things you would rather not know-but knowledge is power and can at this stage be preventative and helpful .
I have little experience and no specialist knowledge but with that caveat, will summarise my thoughts:-
You will, almost inevitably, become an expert in your own condition. You will meet very learned doctors who specialise in the heart and will explain what is going on. Do not be afraid to ask all the questions you need to ask and to query answers until you understand. Some people will be super helpful and others may be less empathetic/generous with their time.
At the moment you will be feeling confused and frightened by the knowledge but the alternative of not knowing and exacerbating a condition is in reality far more harmful to your physical health.
Try to seize it as a positive (hard I know, you don’t want this in your life) - find out what is the optimum lifestyle for you , learn all you can about your heart and you may eventually find yourself fitter and healthier than you ever thought you could be.
You will adapt and it will become part of your life which you will hopefully learn to manage in the optimum way and not remain the huge overwhelming fear that it is at the moment.
There are lots of kind people on this forum who have had lots of varying experiences so keep posting and asking here.
I was first diagnosed and I was told I had dilated cardiomyopathy in 2003, also it wasn’t as bad as it is now, but the main thing I’m still here, I will be 62 on Saturday, God willing. You’re still very young and you must always remember the term heart failure doesn’t mean instant death it really means your heart isn’t working the way it should. 5 years ago my heart function was 15%, after another drug added to my cocktail of drugs this year my function as gone up to 23%. If your heart function is 40% you’re considered to be in heart failure, so you can see the difference.
The main thing is the treatments are improving all the time. I had a 3 lead device fitted to my heart to help it work once it began to fail worse but that only took place in the last 11 years and 5 years when it got worse a defibrillator added on. It sounds like you’re in good hands, like I’ve always been. So try not to worry. Make sure you write down any questions you need to ask on the day of your appointment. And please take someone with you on your first visit. Ask them if you can have a report of what was discussed to be sent to you as well as your doctor. That’s important because it helps you to remember what was discussed.
My consultant was so lovely but I wish I had taken someone with me too (but I wasn’t quite expert the result). I am definitely taking someone with me for my next appointment, with questions too as so many have come up in the last 24hrs. I’ve ordered a little diary too as the nurse who took my bloods yesterday said it’s always good to write down appointments, what tests you have done and when too.
Yes it’s always good to have a diary also I have a wall calendar where I write my appointments and I can see what’s coming up. At first you will have quite a few appointments and you should be given a nurse, hopefully. Since covid I’m not sure how everything works anymore. The main thing is stay positive as you can and use this group for support no matter how you feel. I never had anyone to turn to until I was told by a cardiologist to go on BHF website, because of where I now am with my condition. I find it’s lovely being amongst people who I can relate to.
That dreadful term is enough to cause a heart attack. Your heart is not failing, it's simply not working as well as it should. It can be helped a lot with treatment. When they talk about ejection fraction do remember that a normal figure is 50 to 60% and not 1`00%. There are people on here who have improved their EF TO the top end of normal. Although it's a shock at your age, it's good that it's been found early so they can find the cause and treat you properly.
I’m starting to see that the term Heart Failure is quite a horrible term to use. It is more that it is not working as it should. I have a few more tests coming up so I am hoping I will have some more answers soon 🤞
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