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
Written by
Dan36
To view profiles and participate in discussions please or .
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
I suggest you get tested for sleep apnea. You can do an at home overnight sleep study, so much easier and cheaper than the in-house study. Sleep apnea is very bad for your heart. I was tested a few years ago and stop breathing 54 times an hour. I can't do a CPap machine and see a specialist at the end of the month. I am on this hub because I originally had untreatable high blood pressure, which we thought was my heart. My problem ended up being cancer. Cancer is being treated and BP is now in normal range. So I apologize for not being able to relate to your cardiomyopathy, but a person can have more than one thing going on. When I have apnea I have a lot of throat clearing and coughing. The telltale sign for me is that I always doze off when I am a passenger in a car. With all you have going on it is worth ruling it out as an additional cause as to why you feel so awful. I wish you the best. They will get it figured out. My best friend's husband, age 72, had open heart surgery last summer. Come to find out he had a major heart defect he had lived with all of his life. He had the surgery at Stanford, CA in the US. He has been reborn and is a new person.
I am worried there’s other things going on. I have severe back pain. I’ve now started having bad pain in my hands and wrists. It hurts to grip things and pick things up. I get shooting pains in my hands. I’m up 4-5 times a night needing to wee to so that disturbs my sleep
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.
That would fit with you being in heart failure with a preserved EF. Because the walls of the heart are stiffened from the fibrous thickening, the ventricles aren't expanding enough on the input stroke. The output stroke is OK (thus your near-50 EF), but there isn't enough blood in the chamber to meet the body's needs, even with 50% of it going back out.
The HF meds do things like reducing the volume of blood in your system. Because the number of red blood cells stays the same, you now have a higher concentration of red blood cells in each unit of blood that the heart pumps -- so it's easier for it to meet your body's oxygen needs.
Don’t worry about ur past, I think many of us younger ones on here have had our problems. My cardiologist told me not to beat myself up.
I to have a family history of heart disease. I have had genetic testing and I carry a fault known as TTN (titan) that is the cause of my ill health.
I have been told I will be on meds for life as if I stop my condition will worsen and I really don’t want to be back where I was anytime soon!! Next echo for me is April.
I beat myself up a lot about the past. Never had a care in the world about my health I’ve now a beautiful partner and two beautiful daughters. Will I have echos and CMRI regularly now.
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.
50% is still low, and the doctors will be trying to stabilise your EF so that it doesn’t decrease any more. My EF went from 63% to 50% in the space of 3 years without medication. It’s very difficult to bring EF back once you’ve lost it.
Honestly I had fears, but it's a must I probably wouldn't be here now without medication. Even though family history I was apparently low risk of getting it. But within a short period of time things change with the click of a finger. Some people deteriorate over a number of years and some over a matter of weeks so it is hard to guess which end of the scale I am. So rather than test the theory I went on medication. ( This is from someone that's struggled all my life taking tablets they make me gip)
It is I have been though all the emotions your going through. Especially for you being so young. But honestly medication is the best think to save you from further deteriorating. And it's possible to improve my expected to improve to 50% but I will know at my next echo. But the fact I improve from 20% to 32% in 3 months on medication is a good thing
Yes it's very hard, but I am very sure you're partner and family understand and will find ways to support you. I use to have power naps during the day. Just to give me a little bit more energy. I don't need them anymore.
It might also be a good idea to have a sleep study to check if you have sleep apnea. I have very mild sleep apnea but due to heart failure they gave me a Cpap machine. This has also helped reduce the load on the heart.
There have been quite a few posts lately about how scary (and wrong) Dr (Flippin) Google can be. Go with the consultants advice and see if things improve. Perhaps the medication will keep you going long enough for a full diagnosis and eventual recovery.
You are probably unlikely to be able to determine that for yourself. It is unlikely that you will be the first person with that history having that problem, you are just the only person that you know. If you need reassurance or to discuss with someone who does know then you should use the chat or phone number on this page: bhf.org.uk/informationsuppo... - they are qualified and experienced cardio nurses unlike the vast majority of people on this site who are just looking for support the same as yourself.
To be the low side of normal is not good for a fit young man. And with your family history, the doctors are making sure to protect you whilst they work out what is causing the low EF and dilated cardiomyopathy.
You must believe in your cardiologist and take the tablets he gives you. They are a life saver. You may need a CRT-D (Cardiac Resynchronisation Therapy Defibrillator) implanted in the future. I have Dilated Cardiomyopathy and it was 35% pumping rate on the Echo in the beginning but has gone up now. Tablets were prescribed then I was told I needed a CRT-D and I feel so much better now. My Cardiologist has taken me off some of the tablets now. I have low BP and most heart tablets reduce BP so I take a very low dose that I can tolerate. I had an angiogram which showed no blockages or furring up of my arteries and veins so he stopped aspirin and said he would let me choose whether I carry on with statins so now I only take 3 heart tablets, Entresto, Bisoprolol and Dapagliflozen. I haven’t had any problems with these medications. Good luck and hope everything is sorted quickly for you so that you feel better. X
I can fully understand why you're hesitant with meds, (believe me, none of us like having to take them, or be a member of the HF club,) but if you don't take them your symptoms & EF could very likely deteriorate fast & you're already feeling very tired, what will your family do then?
You say you've felt heart flutters, I'm guessing/ hoping you have been hooked up to an ECG monitor to check your heart rate & arrhythmias?
What meds have you been prescribed?
Initially most of us are started on the lowest dose.
You said you're waking up to go for a wee more often than normal, have you noticed any swelling in hands, feet, ankles or belly, or sudden weight gain of a few pounds or more?
Water retention is common with dialated cardiomyopathy, but can be hidden as in, on the lungs which could be why you're coughing & clearing your throat. I was constantly trying to clear my throat for months after my diagnosis.
I have Atrial Fibrillation plus dialated cardiomyopathy but will never know which came first.
If you have a heart condition, then left untreated it could cause other problems such as Atrial Fibrillation no matter what your EF happens to be.
They prescribed me the 4 which they call the 4 pillars after my first echo but I didn’t get them as the cardiologist said I could wait till after the CMRI. as I was hesitant they prescribed me a low dosage of losartan. I’ve had the 24 hour monitor but not had any results I assume they will tell me at my next appointment. I wake up at least 5 times a night for a wee. And am constantly going all day. I’ve gained weight but I put that down to the Fact I can’t exercise as much now. As post exercise I really start to feel terrible now. That’s when I notice the most heart flutters
Unfortunately the medication is the only thing that will make these symptoms disappear and by not taking it your heart will continue to struggle making you feel horrendous. The meds are designed to reduce the strain on your heart so it doesn’t work as hard. Your heart is a muscle and it’s working overtime due to the genetic condition you have inherited.
Of course there are trade offs with kidney and liver function but your heart will not improve by itself and your symptoms will get worse. Once you’re on the pills it will be for life but sadly you need them if you want to keep living!
Your appointment might only be 3 weeks away but consider the risk you’re putting yourself under in that time by not taking these meds. My husband had a heart attack at 39, he had symptoms like breathlessness and chest pain leading up to it which were brushed off by his GP as asthma. If this had been picked up as a heart issue and he had been put on meds he probably never would have had his heart attack. Now he’s on 11 pills a day for the rest of his life and the damage to his heart is irreversible, he will need a transplant one day but until then the medication is keeping him going. Took him a while to get his head around taking so many pills but he’s used to it now and experiences no side effects, symptoms are gone. It’s worth saying that if you experience side effects there are often lots of different meds in one category that you can trial until you find one that is tolerated.
I would also consider getting iron levels checked as these can be low in heart failure and might be causing you exhaustion plus exacerbate symptoms like breathlessness.
Thank you! It was a shock but we’ve gotten used to it now. In my haste of giving you advice I forgot to say I’m also sorry to hear of your diagnosis! It’s normal to be in a bit of denial and not want to take the meds, that’s how he felt too at the start. But they will help keep you safe and healthy. We struggled to find any emotional support but please do look for it if you can as a diagnosis like this is a big life change and can be hard to come to terms with! The upside is that heart conditions are so well researched and treated you can live a long and happy life with one. Wishing you the best with everything!
hi Dan. Just to let you know that you are not alone and there are some fantastic people on here who have given so much advice and reassurance.
I am 41 and was told I have mitral regurgitation in December. Been told it’s mild to moderate with thickened heart wall.
When I was told it was almost like receiving a death sentence. And still to a degree feels like that now as I have terrible anxiety and over panic. I feared my days were numbered and my beautiful girlfriend would have to carry on alone- if I was single I may not worry as much. But so many things go through your head.
I know eventually il need surgery, I haven’t spoke to anyone who hasn’t had surgery. But I’ve changed my diet, and exercise daily. I can do on the spot jogging for 20 minutes, but outside 5 minutes before I get knackered which is very frustrating.
Medication and treatments are developing all the time. Im using this as a test of character, because it is. Positivity will help.
Hi I know it's hard but please try not to worry. Once you are on proper meds you will feel better. Your ejection fraction is not too bad. Heart failure is not a death sentence anymore. My ejection fraction was 16% now 60 a year on. My AF has been cured with surgery. I was really poorly. My friend is young lad like you his wg was 10% now 50%. Ask about entreso wonder drug.
Hopefully it will be ok. I know I need to start meds my symptoms seem to be getting worse. I’m probably in denial keep shrugging the symptoms off. This week I’ve had what feeels like a pressure in my neck and chest and then pressure in my head followed by a headache. I can feel the pulse pounding in my whole body.
You definitely feel the difference with meds buddy. I am nearly 60 female. I feel amazing drive and work I have fabulous life. Positive attitude and come out fighting. Being brave is the only way and lifestyle changes. Don't forget ask about entreso it made my heart shrink back to near normal size and function. Stay focused and positive. For us every little thing is a bonus. Live every day to full as best you can listen to your body too, it will guide you as to how much you can do. I was told my improvement is a miracle by cardiologists. I pray it will happen for you too.
I say as it is buddy. You got this. Own your health and work with the doctors do everything they advise you too. Eat healthy, rest well, little exercise and often don't try to kill yourself do it gently. 1500 ml fluid restriction per day stick to this strictly as it reduces the amount of fluid therefore less work for ventricles to have to do. Take your medications ask about entreso please 🙏. Stay in touch mate.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Access to medical reports
From heart failure to preserved ejection fraction 
Advice appreciated for cardiology appointment
Hyperthyroid and heart failure
Feeling full up very quickly is this a symptom of Heart Failure? Does anyone else have this? 
