Im 34 and recently been diagnosed with heart failure. I have a family history of cardiomyopathy. Mid way through last year I started to notice I was becoming breathless and lightheaded doing minor activity. I was very fit and have a very physical job but tasks such as climbing the ladder began to make me very out of breath. I also began to notice could always feel my heart pounding in my chest even when laying down to go to sleep. I went to the doctors, and after finding out some family history they referred me for and echo. The results from the echo was an LVEF of 35%. I’ve recently had a CMRI which has shown both sides of the heart are not functioning normally. Although the percentages for the ejection fractions are higher than first thought. 49 left 48 right. I have an appointment with the consultant in three weeks but have been told to go on medication on the mean time. I feel worried that something else could be going on as my ejection fractions don’t seem to low and come under the mild category, but my symptoms seem to be getting worse. Do ejection fractions determine the severity of heart failure ? Reading online it seems to say that an ejection fraction below 40 is considered heart failure. Speaking to others in the same situation would be great. Look forward to hearing if anyone else is having a similar experience.
thanks
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Dan36
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EF isn’t the whole story, it’s just one measurement of your heart’s efficiency. And as you’re probably aware, heart failure means the heart is failing to work as well as it should, not that it’s literally failing.
I know it’s worrying when you have to wait to see the consultant. You may find it useful in the meantime (and you may already be doing this given your family history) to keep a daily diary of what meds you’ve taken and when, how you’re feeling, your blood pressure and heart rate and if the BP machine shows an irregular beat or not. It makes it easier to spot trends or if a certain medicine works particularly well for you or actually doesn’t suit you. Then when you see the Dr and they ask how you are etc you’ve got objective data to share with them.
Also, record any questions you have and write down the answers when you get them .
My husband did this when he got his Dilated Cardiomyopathy diagnosis and found it helped him feel more in control and less like someone things are just happening to.
Have you seen the cardiomyopathy uk website? It’s really helpful and their nurse helpline is excellent.
I hope you get some useful answers at your consultant’s appointment. Best wishes to you and your loved ones.
I spoke to the heart failure nurse and she said the report has said I have dilated cardiomyopathy. I’ve yet to take any medication as I’m very worried about them to. Worried about their long term side effects. I hope the consultant can tell me more. Reading about it online I see alot of information about not medicating till EF levels are 40 or below.
I’m also constantly very very tiered to the point where I feel I could just shut my eyes and fall asleep where ever I’m sitting or standing. I get what feels like pressure in my neck and head then followed by a headache. I’m constantly clearing my throat and coughing. I get a lot of heart flutters to. Does anyone else experience these symptoms.
Yes. I am so weak. Latest eco 20-25%. I need to lay my head/body down to be comfortable. I get a pain beneath rh lung also after being up an hour or more. Mucus informing and at night lot of swallowing. A runny nose when erect.
When your heart is working less effectively the delivery of oxygen and fuel to the rest of your body is slower, so you get tired more quickly and need more rest time
Also this can lead to build up of fluid in the lungs, causing breathing issue and/or coughing, or in the more distant parts of your body (feet, ankles, hands or abdomen) causing swelling
Do try looking up the Cardiomyopathy UK and Pumping Marvellous websites for helpful information - Cardiomyopathy UK also have a telephone helpline staffed by specialist nurses
Thanks for the reply and sorry to hear your getting these symptoms to.
I’ve been reluctant to start any meds yet. The nurse told me from my CMRI my blood pressure is to high, which I find strange because I would think it would be higher than normal going into one of those machines as I found it very claustrophobic and was in it for 45 minutes. I check my blood pressure everyday at home and it never goes above 115/70 sometimes being around 100/60. I thought it seemed low but have been reassured that it’s fine. For me medication will be a last resort.
Heart failure means your body isn’t getting enough oxygenated blood.
Your EF is the percentage of the blood in the ventricle that gets pumped out on each beat.
So if, for instance, your ventricle isn’t filling with enough blood, then 48/49% of that could still be too little. (This is referred to as HFpEF — heart failure with preserved ejection fraction. The 40% number you see online is for the more common HFrEF — heart failure with reduced ejection fraction.)
Your blood pressure could easily just be white coat syndrome. You can get a wearable monitor that takes your BP for 24hrs to confirm, or your doctor may be happy enough with your readings taken at home.
It just worry’s me that the EF isn’t particularly low on both sides but I feel like absolute crap everyday. Supporting a family and being self employed it’s getting very difficult.
hi Dan. Iv not long turned 39 and 2 and a bit years ago aged 36 I to was diagnosed with heart failure and dilated cardiomyopathy.
I was also very fit, doing a very physical job. I had all the syptoms u describe, exhausted after working 13 hour days but then could only sleep between 1 and 3 hours at night. Constant cough, I couldn’t eat. My resting heart rate was 120. I found doing stuff like lifting on the spot or swinging a hammer was ok, as soon as I walked the length of my self I was puffing!
When admitted to hospital my ef was 19% and I was told I wouldn’t work again. My blood pressure was never high and now is consistently 100/60.
I was signed off for 4 months, and then as if by magic my ef was back to 49% and I was told I was as good as out of heart failure. I returned to my job and feel better than ever.
My advice would be listen to ur doctors, take the medication, take things slow and things can return to what we see as normal!!
Hi thanks for the reply my worry is I’m having all these symptoms but my EF doesn’t seem that low. The nurse vaguely said about fibrous thickening of the walls of my heart and being enlarged. I didn’t mention I’ve been sober 6 years this year but previous to this abused alcohol and drugs. So I’m worried this has had a bad effect on my heart.
Hi Dan, have you been referred to the inherited cardiac conditions clinic due to your family history?
I have inherited a gene from my mother which means I suffer with dilated cardiomyopathy, electrical issues and heart failure. I was diagnosed aged 36.
Your EF can be improved with medications and perhaps also a device like a CRT-D. Blood pressure tablets can help to lower the pressure on your heart, helping it to stop dilating. I have my blood pressure as low as I can tolerate it using medication to help my heart stop dilating.
My mother did not have the help I have nowadays in the form of tablets and devices, so I’m taking everything the doctors suggest so that I can live a longer healthier life than what she did.
Hi thanks for the reply. I had a blood test a while back which came back that my heart was not under any pressure. I’ve read that these tablets can cause a lot of problems I.e cause me to have blood pressure problems when I don’t already have them ?
In regards to the genetic testing yes they have said I will need to have this done but I can imagine it will take a long time for the referral. Part of me thinks I should pay private to get to the bottom of what’s going on.
It is frustrating to wait around for letters and results. Have the doctors said what condition they think it could be? Has anyone else in your family been diagnosed?
My cousin had been diagnosed before me, so the doctors knew what gene specifically to look for on the test.
There are different types of medications, so if one gives you side effects, you can switch to another. Be honest with your cardiac team with how you’re feeling and they’ll do their best to make sure you feel your best. I put off medications for a while as I was worried about the side effects, now I’m on 3 a day and my EF has improved and I don’t notice any side effects.
Dan, I dint have your condition , I had nstemi and quadruple bypass July 2023. I am on medication post event. What is your concern about the medication you will be prescribed ? Have you spoken to your pharmacist about the meds and potential issues? All the meds and procedures come with a potential side effect /risk and everyone has to be made aware of them. Meds to drop your blood pressure , meds to regulate heart rate ,meds to control cholesterol levels and prevent plaque breaking off in arteries , meds to help thin the blood etc. If someone has a reaction to a medication then they usually report back and change it . I did with my statins. I hope you find peace of mind and can move on , most of us on this forum are on medication.
I just feel abit nervous about being on something for ever as I’ve read that once your on these type of tablets it’s difficult to stop them. And reading about EF levels not being treated with medication until it’s 40 or below. I have the consultant app in three weeks so I suppose I just have to be patient and see what they say.
Are they solely treating your EF levels or other factors that can cause issues such as high blood pressure , cholesterol , heart rate?
I’m sure you’ll have good discussion with your consultant. In the meantime you could approach your pharmacist for some detail about efficacy of your meds , it might help you go armed either way some information 👍🏻.
I don’t really know what they are treating me for yet. She just let me know in advance what my EF levels are. And to let me know it wasn’t just the left side as first thought. The nurse said there is also things to discuss which she is not qualified to speak on. So just have to wait and see I suppose
my sister is 26 and in the same situation. She was initially told that her ejection fraction was 25% then after her mri found out it was in fact 45%. She has scoliosis and is slim, so these factors hindered the view on the echo. She’s now been referred to genetics at Imperial College to see if it is genetic. Maybe you could ask the cardiologist to do the same as you have family history of cardiomyopathy
I think I have been referred now. Having cardiomyopathy in the family and my previous drink and drug abuse they have said this could have made it worse. Hope your sister is doing ok.
Have you considered that the point of taking the prescribed medication is to relieve your symptoms? All drugs can have various side effects but many of us take them for years with no problems whatsoever- and excellent results in making us feel better and protecting our heart from any further damage.
I will definitely consider medication but no one has really told me what’s going on yet. After the echo I saw a consultant and I got the impression he really was not that worried. It’s all very confusing
If you haven’t been taking the medication which was prescribed for you yet, how will your cardiologist know if it’s working when you have your appointment?
The first appointment I had after the echo was a very strange one. He kept saying your young you shouldn’t be having these symptoms with what I can see on your echo. Then said we can try the 4 pillars used for heart failure, while saying he doesn’t think it is heart failure. Which then worried me as to why I would go on a medication that could have an adverse effect when i might not have heart failure. He then agreed to not medicate me till I’ve had the CMRI.
Dan, it’s pretty simple. If you have DCM and symptoms you need medication. Sorry for being so direct but they’re life savers. I’m symptom-free for 18 months and I started poorly on ICU. You have a reduced EF. Also ask for your BNP blood test results. That’s another number they check. In a way you’re lucky they caught it early. Mine was detected at EF 10% but only mild symptoms. Thanks to the medication I’m now at 51%.
Hi Dan I was 49 in September 23 when I was diagnosed. My ef was 20% I felt like someone ripped the floor from under me. I was crying everytime I was asked about it. I flew the next day on a 8 hour flight I had booked months in advance. Although they advised me not to. But gave me a letter to carry with me.
Thankfully I started the medication and 3 months later my echo showed my ef was from 20% to 32%. So I know its scary but medication will improve your symptoms. I don't think we will ever be normal again as to tiredness, breathless ect but the symptoms improve to bearable standards.
I will have my next echo in a couple of weeks time to see in the 1 year how much it's improved.
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Access to medical reports
Dystolic Dysfunction stage 2
Recent Diagnosis of severe LV dilation with EF of 30% and persistent Atrial Fibrillation 
Ejection fraction 38
