Diagnosed with enlarged heart and lef... - British Heart Fou...

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Diagnosed with enlarged heart and left ventricle isn't working properly

Lebs54 profile image
9 Replies

I have recently found out my heart is enlarged. I have poor flow of my left ventricle. I get very tired and breathless. As of yet no reason has been found as a course of it. I don't have chest pain. Has anyone else been diagnosed and no reason found?

I am having more tests but even my GP finds it strange I don't get chest pain.

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Lebs54 profile image
Lebs54
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9 Replies
Richard762 profile image
Richard762

Hi. You are not the only one with those symptoms. I was taken to hospital after collapsing in the car park at my work at the end of may. I struggled to breathe and couldn’t walk without help. Heart monitor attached by the ambulance crew showed I had a heart rate of 210. Not good. I couldn’t feel it beating that fast. It hit 240 on the way to the hospital. Both left and right ventricles are enlarged. An echocardiogram showed my EF was only 7.4%. An angiogram showed normal arteries. After 8 days and over 100 tablets and injections I was allowed home. It took 12 days to knock the heart rate back down to regular beats. A cardiac MRI scan 3 weeks later showed an improvement. I’m now taking 7 tablets a day, down from 13. I will have a 48 hour ecg monitor fitted Thursday morning. I averaged 4 pints of beer a month, never smoked or taken drugs. The doctors are still trying to work out the reason why it happened. No luck so far. I think I fall into the “it just happened to you” group.

I don’t like not knowing why but I may just have to accept it.

Hopefully we both get answers.

in reply to Richard762

Richard - I just had to say I feel for you both. My EF is 28 and I know how bad that makes me feel. 7.4% is the lowest I have heard off.

Richard762 profile image
Richard762 in reply to

Hi. Thank you for your reply. The drugs are working wonders on me. Latest test shows EF up to 36%. Side effects are not so good. Results of the ECG could save me from having an ICD fitted. One cardiologist says I’m borderline moderate/severe heart failure and if ECG is ok I wouldn’t get an ICD. I’d still need to see the consultant and he would have the final say. No family history or any issues before have the doctors concerned it could happen again.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Richard762

Hi Richard. It's great that your heart has responded so well to medication. I have an ICD and I was terrified about it beforehand, but it's actually great, no real downsides at all. Hopefully it won't come to that for you, but if it does, it really won't be as bad as you're thinking, so do try not to spend time worrying about it. Good luck :)

laura_dropstitch profile image
laura_dropstitchHeart Star

Hi Lebs54. I have heart failure and LVSD and nobody knows why for me either. I was diagnosed while I was pregnant so they thought initially that it was peripartum (spelling?) cardiomyopathy, but once I had an MRI, the damage to my heart wasn't consistent with that. I have a great big scar in one area of my heart and absolutely no idea how long it's been there or what caused it. I do find this really frustrating and am always looking for clues in my past. My latest theory is that it was caused by my being strangled by the umbilical cord when I was born (my mum tells me I used to turn blue across my nose every time she lay me down flat as a baby) but who knows? It is annoying that there's no way to find out, but nowadays I'm of the mindset that it's a good thing it's been picked up so I can receive treatment. I could have been struggling on for years putting more and more strain on my heart.

I have never experienced chest pains with my condition and it was only spotted because a nurse noticed my pulse was a bit irregular during a prenatal check-up. I was breathless and tired but just put this down to pregnancy. Before that, I put it down to not being fit enough, even though I was a lot more active than many very fit and energetic people. I think symptoms are often more obvious in hindsight. I know my consultant and GP are surprised by how much I can do when my heart is in such bad shape. I sometimes wonder if I'm just so used to feeling crap that it has become "normal" for me.

You will no doubt keep wondering about the cause of this, but I would try to focus your attention on treatment, look forwards rather than back. Whatever the cause, you can't change the past, but a positive attitude will make the future much easier.

Lots of luck with it all x

Lebs54 profile image
Lebs54 in reply to laura_dropstitch

Thank you for your reply. Wise words and I will do as you say. Life's too short xx

Ghost-233 profile image
Ghost-233 in reply to laura_dropstitch

Hi Laura it was interesting to read your post, you have had a difficult time.I’ve hijacked someone else’s post but it was just to say to you when I had my son he and i had problems. I managed to get copies of my notes from his birth. I got these when he was 45 so it might be worth your mums while writing to your local health board asking how to get her notes from the time of your birth…. Hope you are doing ok.

lettingoffsteam profile image
lettingoffsteam

I have an enlarged heart due to a condition called left ventricular hypertrophy due to very high blood pressure.My heart function is normal though and I was told that if my blood pressure is kept down it can be controlled.

I was advised that I suffer similar symptoms to you, with the exception that they think my problems involve a leaky valve or a weak muscle that is used for the pumping of blood and oxygen etc.

This I discovered in September after an initial admission via A&E in June.

I am currently undergoing the usual (from what I'm given to understand) "pix n mix" selection of medicines until they can find 3 different types of medication that all do specific jobs, and that all work together without making my life a worthless experience. For me, that involves not suffering a chronic dry cough all day, getting more than 4 hours of sleep in a day and most importantly - being able to ride my bike again.

I am expecting to undergo a Heart MRI at 'new' Papworth in January 2020 to ascertain an exact disgnosis, after which they will attempt to find an exact form of treatment to manage my heart condition to enjoy the best qualitt of life achievable.

The options discussed thus far include medication only for the rest of my life (Plan A), surgery involving replacement valve (Plan B), a Pacemaker (Plan C) and the a worst case scenario of Heart Transplant (Plan D).

At 56, with daughters grown up and living around the world, I have discussed and decided to not go forward with Plan D. I have lived an extremely full 56 years and their are (IMHO) much more needy younger people with families who need that heart more than me.

That does not mean I am keen to book a weeks stay with Dignitas - far from it. Things were not discussed as clinicaly as that sounded, but I have a catalouge of life experiences that have trained me to think in such terms with much ease. The upshot being that I am happy to see how events unforld without such treatment. Might even mean I have to buy and E-Bike!

So, I am still visiting the local "Woolies" for my pick n mix of medication - always on the off chance we will get it right 'this next visit'. The current mixture are affecting my sleep, causing a pronounced dry cough and creating issues that are impacting on weigh management - which is something I should be trying to get reduced etc.

Think we might still have a few months to go to get this right. ;-)

The staff at my local Cardiology unit are extremely capable and reassuring, even about the queues for tests and how that time wating can be of good use to Cardiology.

Welcome to the club...

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