Newly diagnosed

[LabHeart]

Hi, Im 74, and been experiencing breathlessness, have just been told it's heart failure with preserved ejection fraction, EF 61%, and impaired diastolic function. Cardiologist is going to put me on diabetes meds as that is the only thing there is for this. Feeling frightened and confused.

[gkjowett]

’Heart failure’ is a really unhelpful description when you then get appointments for the ‘heart failure clinic’ to see the ‘heart failure nurse’. I don’t know why the medical profession still use it. If you have a kidney malfunction you go to Urology not the ‘dodgy waterworks department’!

An EF of 61% is not too bad, mine was 41% for a while when I had myocarditis but it improved with medication (I’m 77). It usually means that your heart muscle is getting tired or stiff and isn’t emptying all the blood from one contraction before the next one starts.

I imagine the diabetes medication you refer to is Dapagliflozin which reduces the volume of blood in your system by making you wee more and also getting rid of excess sugar. Having less fluid in your body means your heart doesn’t have to work quite as hard. (You might lose a bit of weight as well).

You will probably need an MRI scan at some point to see what is going on inside your heart, which might sound scary but just means lying in a metal tube and being told when to breath in and out. I find MRI scans quite relaxing!

Try not to worry too much, and good luck!

[LabHeart in reply to gkjowett]

thank you so much. That’s helped. I feel so alone with it so it’s great to hear from you.

[Randomslee]

hi lab heart

Sorry to hear your feeling this way. From what you have said your Ef is good and normal. The medical really does work well. It’s hard at first but does get easier. My ef was at 40-45 percent and went up on the meds to 57%.

[LabHeart in reply to Randomslee]

thank you for your kind words

[Jimod]

I agree with the earlier comments, "Heart Failure" is a frightening term. But an ef of 61% is in the normal range. Mine was 17% before meds. Getting any kind of diagnosis is scary, but especially when it's heart related. You are not alone, there are plenty of us out there! The meds will help. My ef is now around 40%. Good luck.

EF

[Jeremyrunicles]

Hi there,

I'm no doctor but have had severe heart faliure as many of the other people replying here. Now moderate after two years.

My ef was 24% (now 45%) and my mitral valve was severely regurgitating (now normal) with a left bundle branch block also ( completely gone). I was only 44 when this started and my docs didn't diagnose me for 6 months. Which is why it got so h

Bad. It started as a chest infection and spread to lungs etc.

Anyway, as many of the people here have commented, your ef is totally fine.

I would be questioning the doctor at this stage as to why he thinks you have heart faliure considering your heart function is so normal.

You don't really want to be taking drug which can damage your other organs if you don't need to.

Us who have the meds for life have regular blood tests to check our renal function to make sure there is no damage being caused.

As I say, I'm no doctor, but i would query it as there may be another reason for your breathlessness. Best to make sure you are solving the actual cause of your issues.

Good luck with it all

[LabHeart in reply to Jeremyrunicles]

Thank you I will I have had an echo and there is stiffness in my heart so it’s not functioning fully. They call any area where the heart doesn’t function HF which is scary. They will do blood test etc when they put me on meds. Thank you for your thoughts. Very helpful.

[fishonabike in reply to Jeremyrunicles]

There is a form of heart failure called Heart Failure with Preserved Ejection Fraction which is what the poster seems to have. In this type the Ejection Fraction is normal (preserved) - see my comment below

[Barre01]

I fell off my chair when told I had HF. Two years on still upright, walking and talking, as well as taking meds. A worrying term, but recently checked by consultant and back with gp.

No longer worried, following guidance and getting on with life.

Best wishes

[LabHeart in reply to Barre01]

Yes me too. Well done you

[fishonabike]

As others have said, heart failure is a scary term but it does not mean doom! It simply means that your heart is not pumping as well as it should. It is also known as cardiomyopathy, which means the same but is more of a mouthful. There are medications which can help with this.

One of the main measures of how well your heart is pumping is your Ejection Fraction (EF), it shows how much of the blood which enters your heart chambers is pumped out again - 50-65% are considered normal, 100% is not possible.

In most types of heart failure/cardiomyopathy the EF is lower, but there is also Heart Failure with Preserved Ejection Fraction (HFpEF), which is what you seem to have. Less is known about this because it was only recognised fairly recently (compared with the other types). There is an established MHS treatment pathway, which you doctors will use to guide your treatment, england.nhs.uk/long-read/he...

Meanwhile the BHF helpline and Pumping Marvellous pumpingmarvellous.org/ may be helpful.

[LabHeart in reply to fishonabike]

Thanks I will look at these. Yes I have HFpEF.

[wilsond]

What! 61% is in the normal range! After my ablation for Atrial Fibrillation a big bonus was that mine had gone up from 50 to 60%!Heart failure is much better described as heart inefficiency, just not quite as efficient as we would like.

The breathlessness is most likely down to water retention, which the diabetes meds will certainly help with.

Do ring the BHF helpline if you want to talk to someone sensible!

Best wishes ❤️

[CerealHappy24]

Hello Lab heart, There a re some very informative replies to your query, I learned a lot.

I have a similar diagnosis to you. I was irritated ,as thought no one taking me seriously?

Turns out, there are lots of anomalies....and lots of gradients, to heart failure? Even the description.

I too was breathless, but now on Amlodophene. Have also lost a little weight and changed my diet.

Hopefully this will help too.

Meditation for anxiety is really helpful.

I wish you well.

[LabHeart in reply to CerealHappy24]

Than you. That’s helpful.

[Spin-off]

Good morning LabHeart. I also have signs of Heart Failure with Preserved Ejection Fraction (HFPeF). I agree with you it’s initially frightening to think and definitely confusing. Most people who have HF seem to have reduced ejection fraction and many go on to receive ICDs as an often effective treatment. Ours is different. As «fishonabike» said it’s still a bit of a newcomer to the cardio world and complex to accurately diagnose.

As I understand it (or at least for me) the treatment involves monitoring and managing any other medical issues. I have had AF and other heart isssues for many years and the cardiologist focuses on keeping those in line. An ICD is not an option. As well as my normal medication I have also taken diuretics to ease the associated cough I had. They weren’t very effective sadly.

Heart failure is such an emotive phrase. But please try not to get stuck on that. I'm not sure I can advise but I cope with it just by forgetting about it. I keep as active and healthy as I can - and stay positive. It’s just a name for something that is now being monitored. I’m sure you’re in safe hands.

[A246]

It is not a death sentence like it used to be. I had for two years now. My EF was only 16% at diagnosis and my left ventricle was severely impaired. Plus I had Mitra valve regurgitation and AF. I know it is confusing. I felt scared and confused at first. But then I came out fighting. I was 57 at the time. Now my EF is 55-60 % which is in normal range. My left ventricle has shrunk back to near normal size. I have had two lots of heart procedures now I feel great

[LabHeart in reply to A246]

It’s so good to hear from you who have a similar diagnosis. I know I have good heart muscle pumping function. It’s the hearts ability to stretch and expand which can cause heart failure. They are investigating further for causes. It’s been such a roller coaster and this group has been such a help with the feeling of loneliness.

[NLGA in reply to A246]

well done

I have AF and possible HFpEF so it’s encouraging to read your post

[NLGA in reply to A246]

can I ask how you achieved the success

Well done to you

[A246]

Hello there, medications, exercise, lost three stones, strict 1500 MLS a day fluid intake. Positive attitude xxx