New To Site

[JMF1]

I am new here just diagnosed with Heart Failure by GP which has come as a great shock. ECG Fine, Chest Xray fine and BNP Test all normal. Just awaiting an Echo just frightening. Any advice would be appreciated.

[shopman]

How did he manage to diagnose you if tests not completed?

[JMF1 in reply to shopman]

Not quite sure went to see him about feeling very tired especially when walking short distances and he listened to my heart and could hear what he described as a systolic mumur and then just said I had heart failure and needed further tests! Bloods etc normal as were ECG and Xray.

[Lezzers]

Don't think Ecg or xrays will show heart failure. However, I thought the Bnp test gives the first indication of heart failure which is then followed up by scans etc to confirm. This is the first time I've heard of the test result being normal but heart failure has been diagnosed. When are you having the echo? My husband has heart failure, was diagnosed in 2012. Don't panic too much, it simply means your heart needs a bit of help pumping & the correct medication will help with that.

[JMF1 in reply to Lezzers]

Thank you been really worried since I was told been put on beta blockers plus all my existing meds. Do hope your Husband is progressing well believe there is so much they can do nowdays.

[JMF1 in reply to Lezzers]

Sorry Echo next week

[shopman]

Let's hope it may not be as bad you think. There are a lot of us here with HF of differing degrees and some have been around for quite a few years - hopefully will still be here for years to come. Main worry for me was the diagnosis without having done all the tests first - who knows if GP has got medication right.

[JMF1]

Thank you for your support maybe I can connect with someone on the site with Heart Failure always good to chat with others with same sort of problems. Must admit did have concerns about meds just hope he knows what he is doing- think he just prescribed to keep BP in check and to support heart function as he said it was heart failure due to systolic murmur!

[Lezzers in reply to JMF1]

There's a closed Facebook group called pumping marvellous, great place for advice, help & support for people with heart failure, their families & their carers. Your echo will confirm (or not) your diagnosis, let us know the results when you can. There's lots that can be done for heart failure, such as ICD's my husband has one which they may update it so that it paces his heart as well. Many people can & do, with lifestyle adjustments, live reasonably normal lifes with near a normal life span. With the meds, I think they automatically prescribed the HF cocktail of drugs & adjust as necessary. If the diagnosis is confirmed you should be referred to a heart failure nurse, ask your GP/consultant for a referral if they don't mention it. Nice guidelines are you should be referred if they're in your area & they are invaluable for sorting your meds out, arranging scans etc & to talk over your worries/fears etc

[JMF1 in reply to Lezzers]

Will let you know when further tests done and thanks for link on Facebook great to have support.

[shopman]

Why don't you look up Pumping Marvellous @ pumpingmarvellous.org/

[JMF1 in reply to shopman]

Thanks will do, just been given same link by another member. Great to have support.

[SpiritoftheFloyd]

Hello JMF1

I had a heart attack at the end of December 2018 and went into cardiac arrest just as they got me to theatre. I had a single stent via keyhole surgery and due to the state of my heart was put into an induced coma for 24 hours. Spent some time in ICU and given an Echo after 3 days in hospital. At this point i was told I had Heart Failure, but not to worry as they could control it with medicine!

After discharge, had another Echo at the end of February and seen a consultant at the beginning of April who confirmed my EF hadn't improved greatly since the original Echo and was about 35%, and my HF was NYHA Class1, said that they thought that I could at some point in the future suffer an abnormal heart rhythm which would cause another cardiac arrest, they therefore wanted to fit an ICD to prevent this. Had a further meeting with the consultant in charge of fitting these devices who explained everything to me, am now booked into the hospital on 19th August to have ICD fitted.

Since discharge have read up absolutely tons on the subject of HA and HF. I've stopped smoking (for good) stopped drinking (for a while) changed my diet, low carb, no processed stuff, lots of fruit and veg lost 32 lbs weight so far, intend to make that 40 lbs by the middle of June when my BMI will be down to 21.9, originally 28 pre HA. Have been going to cardio rehab gym for the past 10 weeks and enjoying it, doing all the exercises without any problem at all

I know everyone is different, but for what it's worth this is my experience.

I know how devastating it is when someone looks at you and tells you that you have heart failure, the word failure suggests that that's the end, put your affairs in order and prepare to meet your maker. Despite the words don't worry, I felt destroyed.

I now know that it isn't the end, from being in a dark place 22 weeks ago I now feel very positive about the present and the future. There are a number of posts on here about people who have been diagnosed with HF more than 20 years ago and are still going strong.

I hope this post helps you to stay positive and good luck with your Echo next week

[JMF1 in reply to SpiritoftheFloyd]

Thank you for your reply and pleased you are, after a long journey feeling better, and you are correct in the terms Doctors use can be devastating. Thank goodness for sites like these.

[Milkfairy Heart Star]

This is an amazingly positive reply.

My Cardiologist uses the term Heart function and his job is improvement not failure!

In some languages the term heart failure isn't used at all. It would be great if a more hopeful and positive term could be used instead of heart failure.

[JMF1]

Thank you for your reply pleased to have found support it helps so much.

[mariancolyer]

My only accurate diagnosis was by Echogram - and then cardiac MRI. Heart down to 35% but with drugs - especially Entresto - has increased to 40% and fairly stable now. Living life as full as I ever did so please don't panic.

[JMF1]

Thank you - just great to have support when first diagnosed as when he said Heart Failure - I just sat there drove home and cried. Pulled myself together and realise many many people suffer with the same and that with the right meds I will get back to my usual self (whatever that is). Biggest help from these forums, same as Thyroid and Diabetes sites where I have found help.

[13allit]

Hi

I had a leaky vital valve which had developed from a heart murmur and my cardiologist explained that anything that means the heart isn’t working as it should can be called heart failure. My valve was repaired last year and I’m absolutely fine now so no longer have heart failure. It’s a very frightening term and like you all my tests were coming back OK but I was very tired and got increasingly breathless. All gone now and if I didn’t have a scar I could almost forget it all happened. Good luck and make sure you have written down any questions before you see anyone else.

[JMF1 in reply to 13allit]

Thank you hopefully find out next Tuesday as having echo done how long were you in hospital for your valve repair what I have read all seems a bit scary.

[13allit in reply to JMF1]

I was discharged five days after my op. It is scary but it’s be of the most common ops the surgeons do. As soon as you wake up you’ve usually lost ally the symptoms from the leaking valve which is amazing. The thing you need to do is to keep as fit as you can because if you do need an op you’ll recover quicker. Also stay in touch with your GP as they manage your symptoms rather than the cardiologist. Mine made sure my fluid retention was kept as low as possible which really helped me. I had several tests to check how bad things were and they also did an angiogram to look at my blood vessels. After this I was passed to the surgeon who talked through options. I know some now do keyhole but mine didn’t and I wanted to stay local. It can be a long time to wait due to long lists but they will do the very ill people first and work through everyone else in the order they came on the list. I was diagnosed in February 2017 and operated on in May 2018.

[JMF1 in reply to 13allit]

Thank you for your response - always good to hear from someone who has unfortunately gone through it - see you had a bit of a wait for the op what did you do in the meantime to keep as fit as possible and what sort of meds are you on.

[13allit in reply to JMF1]

Before my op I was going to the gym - I had a personal trainer who changes what I was doing according to how I felt. I also do yoga which was brilliant for breathing and lots of walking. About 6 weeks before my op I had to give most things up as I was too tired. Post op I’m back to doing everything without thinking. I’m on a low dose of aspirin and ramipril. Both to protect my heart. I was on a beta blocker but it affected my breathing so the cardiologist took me off and I’m fine. I’m on annual checks with the heart valve clinic and that’s all. It was definitely worth it all and the one thing I wasn’t prepared for was how it affected me psychologically. Seems to happen to a lot of people. If you have any further questions I’m happy to help if I can and good luck and stay positive.

[JMF1 in reply to 13allit]

Thank you and have a good weekend lets hope weather continues.