dilated left ventricle informed over the phone (heart failure) 1 week ago

[Wallewoos]

Hello everyone I am a 37 year old man with no signs or symptoms of any heart condition until now .

aprox a month ago I was sent for a echocardiogram to check my heart (routine every 5years ) as my father has a pacemaker since the age of 50 and 5years ago had an aortic aneurysm. 5 years ago I had the same scan which was all clear.

Anyway I received my results from my echocardiogram one week ago and it wasn’t what I expected (heart failure) I was expecting it to be all fine as it was previously. However, the scan showed dilated left ventricle with EF of 35 , which is not great but ok .

I have never smoked or done drugs and only drink on rare occasions. I am fit and active also a regular at the gym . My BMI is slightly higher than I would like (overweight) however the BMI doesn’t differentiate between extra weight and muscle , and I am tall 6’ 3”and well built.

I haven’t had any of the signs eg shortness of breath, fatigue ect. I did have palpitations aprox 1 month ago lasted seconds and went back to normal this was after a very intense physical session, more then normal.

My blood pressure is between 117/77 and 130/80 and my pulse is always low especially resting around 58-67

My BP and pulse go up a little when exercising but returns back to norm shortly after my exercise.

I don’t believe I have any of the factor of this condition except possibly familial link (farther heart condition).

I have not seen any doctor yet except the phone call to inform me of my diagnosis .I have been referred to cardiologist and am now on the waiting list. I was informed this afternoon the list is currently 72 weeks long . Lol

Considering going private due to the waiting time as I would like to go on meds ASAP for my best chance .

Has anybody else’s considered gonging private or has and if so what happens at the appointment?

I have done loads of reading online and this only scared me more.

I did manage to get the GP whilst on the phone to arrange for my blood to be taken (happening tomorrow ) as I hoped the the cardiologist appt would have been closer in time frame .

Any advice welcome as understandably worried !!

[Tos92]

Hi Wallewoos

I’m sorry to hear of your heart failure diagnosis. I expect it’s come as a surprise given your age.

Firstly, the term heart failure isn’t as scary as what it sounds and others on here will tell you exactly the same thing.

Most people with heart failure find that after starting treatment, they can actually get back within the normal ejection fraction which I believe is between 50%-70%.

In terms of going private, I do have experience with this. Due to long NHS waits and not being able to find a cardiologist which I felt understood my condition, I have paid to have several consultations and tests done privately.

From my experience, I will definitely tell you it’s not cheap however, it does mean that you have your tests done a lot quicker and results back within a week. This way they can start you on medication sooner and do further testing if required.

Perhaps book a private consultation with a cardiologist in heart failure first, which is somewhere around £200-£250. Based on this, you may find that making the decision to go private or not will become easier for you.

Let us know how you get on.

All the best.

Tos

[BeKind28-]

Hello

It really does sound like this is hereditary heart problems ran in my family to as close as my Dad

I bet it did come as a shock but please try to keep of Google only ever tells you the worst scenario

The same will happen privately at an appointment as it would NHS they are even sometimes the same Doctors but you do get seen quicker and if I could afford it and they told me it was a 72 week wait I would go private

There are great team of BHF Nurses you can phone to get some good advice from and might help to ease you worry I will put you their number on

Let us know how you get on x

Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm

[Wallewoos in reply to BeKind28-]

thanak

[BeKind28- in reply to Wallewoos]

x

[Mountwood in reply to BeKind28-]

Glad you are back!

[BeKind28- in reply to Mountwood]

Hello

Thank you

I hope you are keeping well x

[Wallewoos]

thank you

[BHFbiker]

I'd recommend getting the private consultation for sure. The mental torture of waiting for an NHS appointment is too much in my experience. My diagnosis came as a result of a routine health check. Zero symptoms, very active at gym where I work(ed) part time. Turned out to be aortic valve compromised (actually had a hole in it), probably by bacterial infection.

So essentially without the private cardiologist (who said urgent heart surgery needed), I'd probably be on the floor somewhere at some point. Ejection fraction was 21%.

Post op now up to 40% and working way back to full gym activity via cardio rehab.

You need to know what's behind it though, else your brain is just on overtime worrying

All the best

[irishwife93]

Hi Wallewoos

If you are considering going private I would try and choose a cardiologist who works at your local NHS hospital. A lot of consultants split their time between the NHS and private work. My husband saw his cardiologist privately for an initial appointment and he then referred him to the heart failure clinic at our local hospital which he attends as an NHS patient. This works well for us as we can get a quicker private appointment if we need one urgently, and the cardiologist organises everything else for us like scans and surgeries on the NHS. Luckily he hasn’t had to wait very long for these as I believe once your in the system and the cardiologist understands the urgency of your case they are able to speed things along.

I would also say you have a great chance of boosting your ejection fraction if you get on the right medication such as Entresto. People have gone from 20% EF to 50% with the right meds and anything above 50% is considered normal. There is a lot of support, care and research into this condition and who knows what will be available to treat heart failure in a few years time.

[edplayer]

Hi Wallewoos,

As others have said here, Heart Failure sounds very frightening but (especially if you have no symptoms) there is every chance you can continue to live well for a very long time. I have a similar condition diagnosed in my 40s and despite lots of tests (echo, angiogram, MRI, genetics test) we still don't know what caused it for me - but it wasn't poor lifestyle. Probabluy a virus from a long time ago. It took me quite some time to come to terms with being unwell but not feeling unwell and being told I needed medication, probably for the rest of my life. But with the right medication and other treatments your EF might well improve. If you can afford an initial consultation fee (£200-300) I would definitely go for it. Try to find a good cardiologist locally who also works for the NHS so you can switch back to NHS care if you need / want to. If you are lucky you may have an NHS Heart Failure nursing team in your region. You should be referred to them (your consultant could do this, maybe also your GP). These nurses are absolutely brillant. They understand HF very well and are much more accessible than consultants to guide you on how to manage your condition (e.g. avoid salt, manage fluid intake, monitor for rapid weight gain) and take your medication. They will help you get onto the right medication and gradually manage your dose up to the maximum your body can handle without unwanted sife effects. Good luck and keep us posted here.

[DoggieMum]

I my goodness how awful for you especially as you are so young and fit, but I would agree with Tos92 in that, if you can afford it, go and see a cardiologist privately

[pablojack]

I went private for a similar issue for the reasons mentioned. However after reading that a consultant at Guys St Thomas said that an underlying cause for idiopathic dilated cardiomyopathy could be found in 50% of cases, I asked for an NHS referral to that hospital. I was frankly amazed at the speed and comprehensive nature of the tests performed and the speed of reporting the results. In addition there was up to 1 hour of discussions with the consultant on the issues. This was vastly better than the local NHS and the private option.