This is my first post. Back in 2019 I had what felt like "flutterings" and breathlessness/dizziness. I was diagnosed with arrhythmia. A 24 hour ecg showed ventricular ectopic beats. An echocardiogram showed mild valve leakages but no obvious cardiomyopathy. I was advised to stop/reduce my caffeine intake and my symptoms subsided.
Covid hit and in April 2020 I gave myself an inguinal hernia, in June I got shingles, in August I had the hernia repaired and In September I got PMR (polymyalgia rheumatica) which I still have. I mention this because I have been on steroids ever since apart for a short period in 2022.
Then in October 2022 the flutterings and breathlessness and dizziness returned. My PMR consultant referred me to cardiology and in February 2023 I saw the original consultant again. He organised an ecg which showed 14% ventricular ectopics including couplets and bigeminy and trigeminy. I was given Bisoprolol in August 2023. The consultant referred me for more tests.
Shortly after that severe fatigue hit me. I put this down to PMR/tapering steroids - a known and common symptom. But now I am not so sure.
I had a NM Myocardial Perfusion scan in February 2024. This showed that part of my heart muscle was not getting an adequate blood supply. Shortly after that I had a echocardiogram which showed that my LVEF was 47% plus a few other "mild/borderline" results. I was given statins, aspirin and an ACE Inhibitor.
Last Thursday I had an angiogram. That revealed a blockage in one of my arteries and I am being referred to have a stent fitted. The surgeon said I was "fairly non-urgent" whatever that means.
So to my question. Does what I say describe heart failure, heart disease or I suppose both.
Many thanks
PS sorry to go on so long.
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Heart failure simply means the heart is not pumping efficiently. It’s not a condition but a description. The term heart disease is also a description and covers issues with heart muscle, arteries and even arrythmias. It is definitely possible to describe your heart issues either way.
When my cardiologist told me I had heart failure he quickly said it just means your heart isn't working as it should. Then he laughed and said we really should have a better word for it as people think they are dying. Then went on to stay the medical profession is very outdated in some of its descriptions.
That reassured me. As I had never had an echocardiogram he ordered one but not expecting to find anything. But then I had a bubble echocardiogram and the radiographer say we can see bubbles but not where we expected. So ran the test 3 times.
I have always had any tests done that doctors say I need. As I have had something wrong with me since birth constant pain in my legs and falling all the time. My limb jerks started in 1988. Finally had a diagnosis in 2022 after my neurologist had my whole genome genetically tested. I have the rare hereditary Hyperekplexia gene mutation SLC6A5 type 3. Which effects my mobility and a host of other things.
Back to my heart after a MRI scan in 2021 the hole isn't in the connections between the chambers of my heart but a small hole between my heart and lungs. Apparently we have flaps round our heart which close before birth that one didn't. But it wasn't until I had jaundice in 2017 due to 2 tablets I had been taking since 1992 to try and control my limb jerks and pain that I had heart problems. I was left with hearing my heart beat in my left ear and heard missed heart beats ,had heart flutters and palpitations. My old GP only did in house ECG and diagnosed LVH and not given any heart medication.
I have PAF and on Flecainide and Apixaban. I do get breathless especially in hot or cold weather but because the hole is so small safer to leave unless I get chest pain which I don't.
I am 66 now it's only because I moved over 100 miles to the north west in 2019 that I finally got a GP who sent me to see a cardiologist and neurologist who ran the tests my old neurologist didn't nor did he give me a tablet to stop my limb jerks. My new neurologist put me on Clonazepam in 2020 and after 32 years of limb jerks and 4 months of siezures within 2 weeks my limbs where still.
Healthcare is really a postcode lottery. If I hadn't moved I dread to think what my life would have been like.
My brother has AF permanently and has 2 stents in his heart and they changed his life. Before them he couldn't walk up a flight of stairs without having to stop to get his breath. He swimming 50 lengths every morning and walks 5 miles a day he will be 65 this year.
Having a diagnosis is the first step on getting the treatment that can change your life for the better. Wishing you all the best for the future.
Gosh you have been through a lot. I hope everything stays stable for you now. You have been reassuring on two points. When I heard heart failure I thought oh my gosh what's going to happen but, as you say, it's really a very poor and alarming diagnosis. Secondly your brother's experience gives me hope that I'll get back to where I was, not sure about the 50 lengths though 😁. Thank you.
Glad I could help. My brother had a hip replacement 8 weeks ago and because of his heart had it done under spinal block and sedation he sleep through the wholev3.5 hours and has made a full recovery. Back driving and swimming . But he did all the exercises they told him to do and walked everyday only a couple of hundred steps for the first 2 weeks then adding more each day. He's like me a stubborn sod and won't give in.
Take care of yourself. And keep us posted how you are . 😊
And sometimes it is referred to as cardiac failure but Ennasti's reply sums it up.
LVEF refers to the Ejection Fraction of your Left Ventricle. 100% would mean that 100% of the blood in your left ventricle is pushed out of the heart and around the body when the left ventricle contracts. 50% and upwards is ordinary, it would never be 100%. My husband's was 23% when last measured and the surgeon would like it up about 40% to do a by-pass operation. Other people here have reported 14% and the like. 47% is only just under the 50% so hence the mild/borderline.
My husband also has severe fatigue and we think it is caused by everything. Some of the medications (still being adjusted by the cardiac nurse each time we see him), the blocked arteries, the heart not beating as well as it could and the stress of all this etc. Lots of people on this forum report tiredness taking Bisoprolol and there are suggestions for alternatives if you hunt around the different threads. My husband is taking Bisoprolol but as medications are still being sorted out we have not tried to get it changed. We are also thinking that once the arteries have been by-passed and more blood is getting to the heart and it is beating more strongly that he will feel less fatigued. A stent could do the same thing.
Your reply illustrates neatly the difficulty in working out what is causing what. I had PMR related fatigue before but it was a lot worse more recently but at first I put it down to PMR flaring. But now I think it's more likely the blocked artery so I hope the stent will do the trick. Thank you.
I've been having the same problem many years but all get from the hospital is there nothing wrong with you when I do any fiscal work come over Dissy and sick I can't even hold a glass of water
I had mri at barts hospital they said they couldn't find anything wrong with my heart but on the 17th of April I was taken by ambulance to hospital they found a block arterat the bottom of my heart I was told by the consultant I've had this for a while he then said they probably won't do anything because I never had a heart attack and I'm over 76 now. Over hill and far away I just want to know what happened to provented medicine in the NHS
As a lay person I would say that you had heart disease but not necessarily heart failure (got to be the medical term with the worst PR ever, what a misnomer!). An LVEF of 47% sounds a bit better than borderline HF to me. When I was diagnosed with HF in 2013 it was based not just on the classic symptoms (breathlessness, swollen ankles and general fluid retention, fatigue, low LVEF) but also on a blood test which showed an HF indicator enzyme. My cardiac history is MFs and persistent AF and I now realise that HF was a likely development. I was prescribed a diuretic which acted very quickly on my fluid retention and I've been getting on fine.
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