Recent Diagnosis of severe LV dilation with EF of 30% and persistent Atrial Fibrillation

[racer373]

The last 2 weeks of my life have been, without question, the worst. I'm 47 years old and thought I had the perfect life. I'm married with 3 boys (14, 16 and 24). Although a little overweight I'm down the gym most nights or cycling my bike if the weather is good. When not down the gym or working I like relaxing at home with my wife with a glass of wine, probably too much wine

I had a congenital heart defect when born that was corrected with surgery at 2 weeks old. About 5 years ago after a checkup it was noticed I had ectopic beats with a mildly dilated LV and an EF of 45%. I was given Bisoprolol(2.5mg) and Lorsartan(100mg) and thought nothing of it and continued with my life.

My EF has jumped around a bit in the last 5 years 41%, 51%, 40%.

A few weeks back I noticed my pulse was slightly higher than normal so I booked an appointment with my Cardiologist.

While having an echo it was noticed that I had Atrial Fibrillation / Atrial flutter during the echo which was confirmed with and ECG and a 24 hour tape.

The diagnosis of Atrial Fibrillation was worrying but after speaking to my parents felt some comfort in the fact my Dad also has it and it hasn't caused him any problems.

I then spoke with the Cardiologist who started talking about Heart Failure and although I haven't got any symptons should be taking medicine for "life expectancy" (see meds in bio)

That's when I got the diagnosis of a severely dilated left ventricle with ejection fraction of 30%.

Since then I've really been struggling, the constant fear of dying while my kids are young, never seeing them marry or settle down. I can't stop thinking how long I will have left, 6 months...1 year, 5 years...When at work I can't concentrate, people around me know whats happening and they try and help but I can see that even they are concerned for me. Every time I get to a point of some positivity I learn something else about my condition and go back to thinking negatively again. It's a constant cycle. The only saving grace is that I can sleep ok and go to bed early.

I discovered the BHF helpline yesterday and ended up having to make 2 calls. The Cardiac nurses where great and really helped settle my anxiety.

Before any of this I was the most chilled person, never got anxious and rarely got stressed.

My wife has been great, I can see she is going through the same emotions, sometimes getting too much and she starts crying in public places like supermarkets. She has seen a private GP to get some anti depressants to help. I'm conscious of how this is effecting her and try and be positive when I can around her.

The children know that I have an irregular heartbeat and I need an operation but I haven't discussed the Heart Failure with them yet.

I am hoping to have an Ablation before then end of the year and although the AF isn't the cause of my HF it may hep with it.

The years leading up to this I have been a moderate/heavy drinker having a few large glasses of wine most evenings. Since I noticed changes in my pulse I have stopped drinking alcohol and caffeine and lost a noticeable amount of weight.

I'm not sure what the cause of my HF is but the severe dilation couldn't of been helped by my drinking.

My dream is that after the Ablation, when the Atrial Fibrillation has gone(maybe after multiple ablations) my dilated LV will improve or at the very least my EF get to a higher number so that I can continue to live a relatively normal life. I'm too scared to think this at the moment.

I know that the way I'm feeling must be the same for a lot of people on this forum. The news of Heart Failure is such a shock. Would be really keen to hear from anyone who could share a similar experience.

[PadThaiNoodles]

My heart issues are different than yours (degenerative valve disease which recently required open heart surgery).

However, I also have major depressive disorder, and I couldn't help but notice that your description of your recent struggles would be closer to how I would describe my depressive episodes than my cardiac events.

Both valve disease and mental health issues run in my family. While I was diagnosed with depression about 10 years before my open heart surgery, my sister's depression was triggered by her open heart surgery (she was 40 at the time).

FWIW, both my sister and I get significant improvement from antidepressants.

[DiyChas]

Wow. A big problem at 47!You will learn (as all of have) HF is just a description.

What you do will prepare you for a good future if your let it.

I have been very athletic all my life and suddenly find I have HF.

After researching, I understood it was up to me if it would consume me or cause me to manage it to minimize impact on my longevity.

Iam now almost 80 and managing nicely.

You may be a candidate for an aortic valve replacement or you may need stents.

I really can't tell what your primary physical problem is.

But, my approach is always be positive!

It certainly relieves stress!

[SchnauzerOtto]

Hi there, I am 44 and in a very similar situation. In March this year I was diagnosed with heart block and Dilated Cardiomyopathy. I was hospitalised for a week and had a pacemaker implanted. I was then sent for genetic testing, which fortunately came back negative! So far it is totally unclear what caused my condition and how it is going to progress! I was put on Bisoprolol and Ramipril and felt really terrible on the beta blockers. Completely lethargic and no energy! My Cardiologist suggested to pause the beta blockers and see how I feel. It was not easy to wean off them but I started to run 5k again 3-4 a week and generally have much more energy.

I have young children too and I totally understand your anxiety. I found a lot of support at the local Cardiomyopathy UK group and they have a lot of great resources to educate about the condition. I went to their recent national conference and some of the speakers did a great job in reassuring us that there is actually a lot that can be done with medicines these days and that major cardiac events caused by CM are actually quite rare.

I also found therapy quite useful to deal with the diagnosis and just having someone to talk to, who is not family or friends and developing some tools to cope with difficult days.

[AmandaLouise77]

The term Heart Failure needs rebranding. It just means sub optimal not that you're leaving any time soon. I was diagnosed HF, EF 28% and persistent AF in Jan 24, ablation in March, EF now 57%, so yes your dream may come true. I'll have the HF label for life which affects travel insurance but actually gives benefits too. I generally get a Dr's appointment when I need it and I've been offered vaccinations that are usually only available to older people.

[pablojack]

My experience was that untreated flutter( no symptoms) over an extended period caused enlarged ventricles and lower EF. This was reversed after cardioversion and one year of candesartan. No problems since.

[Survivor1952]

My EF was at 30% before my OHS, it is now over 60% (normal for my age) and I’m leading a normal, very active, life at 72. Modern medicine/surgery can deal with a lot more than we realise.

The use of the term Heart Failure is very emotive in my mind and covers a very wide range of issues. In my case it was first used by my GP some months after surgery and felt wrong!

[Shabana1974]

Last September 2023 my LF was 20%, I was 49, on diagnosis I have been put onAspirin 75mg tablets

Atorvastatin 40mg

Bisoprolol 3.75mg

Dapagliflozin 10mg

Entresto 97mg/103mg

Spironolactone 25mg.

These were introduced and increased slowly until optimum does for me. By January 2024 my LF increased to 32%.

So please don't worry the cardiologists will tweak your medication and things will improve. If medication fails next step is heart transplant so there is nearly always something they can do.

[Slidingdoors99]

Hi! Just to say that I completely understand why you are feeling anxious and worried- and your wife too.

Sometimes the health professionals don’t always take this on board I think and it’s unusual for someone to say that it sounds pretty bad, but here are your options going forward…

I often wake in the middle of the night and feel queasy when I remember my heart problems.

It doesn’t take me long, because the banging and quivering in the chest reminds me straight away!😬

Hope you get some more positive news soon.

PS I have HCM, VT episodes and permanent AFib.