Newly diagnosed with severe heart failure

[Sydney0810]

Hi, I am 55 years old female; recently diagnosed with severe heart failure…. So scared I know absolutely nothing. I have commenced medication - but all I can think about is that I am going to die

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Hello

I am sorry to hear about your diagnosis and when you hear something like this feeling life will be over is everyone's thought and it is frightening but with what they can do today it does not have to be that way

I had 3 heart attacks which resulted in heart failure mine was 40% I looked on your Bio yours is 35%

I was petrified literally , angry why me every emotion you can think of including my anxiety going through the roof !

I had a triple Bypass which has improved everything

Have they spoken to you about your options as well as medication maybe Bypasses

Maybe you have not had chance to see the Cardiologist and discuss what they can do but they can do so much now so I know you will feel afraid but trust them they will do everything they can to improve this

You are not alone so many have been or going through what you are at the moment and you have here to come and talk which I hope helps even if in a small way x

[Anon2023]

hi. I can totally empathise with how you feel. What you are experiencing is a normal reaction to a traumatic event. I am 51 and last March I was diagnosed with heart failure. I nearly died in January last year from endocarditis then the heart failure followed as a result of the damage caused to my heart. I made the mistake of googling my condition and then my mental health took a nosedive. I’ve since learned that heart failure is a horrible term which basically means that your heart is inefficient. There are people on this forum who have lived long and full lives with inefficient hearts and it isn’t a death sentence. There are tons of medications and interventions that can help, depending upon the cause of your problems. Your first step is to seek information from reputable sources, please try not to Google as the information is likely to be outdated and irrelevant to your circumstances. There are great sources of information on sites like Pumping Marvellous and the British Heart Foundation. You can always ring the BHF nurses on 0300 330 3311 Mon-Friday 9-5. I’m hoping that you have support from family and friends and your medical team. You will also find loads of support on this forum from people who understand what it’s like to have heart problems. X

[Larneybuds in reply to Anon2023]

Great reply and totally agree that the term heart failure is so daunting. When you are told this the immediate response is doom and gloom but you soon find out that it just means your heart isn't working to capacity and needs a bit of assistance. I really do wish they would change the name as I don't know one person who hadn't gone into panic or meltdown when told. I was the same, especially having been so fit and healthy all my life. It was such a shock. I look to my mother in law who has had heart failure since she was in her 50s....she is 82 now and has had two serious heart attacks and ongoing issues but supported really well on medication...still here at 92 and independent. Heart medication and what they can do with our pumping system is fantastic now and heart technology and how quickly it is moving forward is amazing but I really do wish they would do something about the diagnosis name x

[Desktop54]

Dear Sydney0810,

Everything you are feeling is totally normal. My Hubby (aged 55) had a srvere HA about 14 months ago and it left him with an EF 40-45%. It is a very scarey time for you and your loved ones. It took us about 3 months before we stopped feeling that heightened sence of emotion 24/7. Every one is different of course. My advice would be to talk to your specialist HF nurse and ask a million questions. They are brilliant. I want to wish you well. Give yourself time, time to think, time to process, time to get used to the medication. This is a great forum for help, advice and generally pointing you in the right direction. Best wishes.

[uzininemm]

Hello, I was diagnosed at 52 and spent 14 days in hospital like you initially thought I was going to die. Mine was 20%

Bad news first, this has changed your future life and there is currently no way to repair the damage done.

So yes it is serious but The good news though, with meds, healthy eating, exercise, fluid restriction (1.5 litres a day) you can have a good long life it will just be different.

The heart failure nurses should get you on a NHS heart rehab programme. do ask as from my experience and others you will not regret it.

In regards to the mental side I found setting myself some challenges helped, for example exercise, I don't know what your exercise routine is, but lets say you go for a daily walk of 20 minutes, set yourself a target of increasing it to 22 minutes or speeding it up a bit and doing it in 19 minutes. It doesn't sound a lot but the sense of achievement is very helpful.

Also don't rush any improvements you are hoping to make.

I started off by being able to walk about 100 yards without getting tired, now I can go to the gym 3 or 4 times a week and do 10k on the bike and 1.3 miles on the treadmill (on a 5% slope) in about 55 mins.

Take care and I wish you all the best, and yes do remember if you need to know anything else (based on experience rather than the medical expertise which we leave to the professionals) we are to help.

[Kwagmire]

hi Sydney I had ha hf god 5 years ago at age 54 ef of 29 still the same I think I don’t ask any more I feel good so that’s the main thing you need to stop worrying I think that’s the worse thing you can do ef just a number live your life I’m sure the worrying will go mine did after a while I used to phone my cardiac nurse 5 or 6 times a day with every twinge but that stops after a few months godbless you always kwagmire

[EU95PTM]

I’m sorry that you find yourself here. I’m 51 with HF following a heart attack. I can only echo what others have said here. Do check out Pumping Marvellous, they have loads of information which will really help calm your fears. I’m almost a year into my diagnosis and whilst the fear never truly goes away completely, it is far less that it was initially.

[Jackabee]

hi, I was diagnosed with an EF of 30 a year ago. I too thought that I was going to die imminently. I saw all the meds as shameful proof that my body had failed me. Now they are my friends, they keep me alive and I feel awake whereas before I was always tired and wanting to sleep. Things will improve for you too if you follow the doctors’ advice. Find your support here…you are not alone and we have all been through similar emotions and will do our best to help.

[Qualipop]

Heart Failure is a horrific term which sets everyone in a panic. It does not mean your heart is going to pack up. It simply means it isn't working as well as it should. There are lots of medicines and treatments that can improve it's function. In 1948 when there was no treatment at all, my mum was diagnosed with heart failure after developing eclampsia in pregnancy which damaged her heart. She never had any treatment at all and lived a perfectly normal life to the age of 69. If treatment had been available, she would have lived a lot longer.She smoked, she went for long hilly walks with her dogs and it never affected her life. The only thing she was ever told was that she should never have a general anaesthetic so she had a hip replacement by epidural.

[Deejay62]

Hi I was diagnosed with HF due to dilated cardiomyopathy at around 43 ish. I am now 62. 5 years ago I was told I was at 10% prepare for transplant or death. I was sent to Papworth Hospital. I was given Entresto and other cocktail of drugs. Last year a new drug came out and was added to the cocktail. My recent Echo showed my heart function is now 23%. Medications are improving lifespan daily. It’s not always doom and gloom. Heart failure doesn’t always mean death. You might need counselling.