Hi, I'm new and could really do with some advice. I went to the gp in April- had a bad back from decorating. I mentioned that I was still feeling tired (I saw gp last year feeling tired) and asked if it could be my thyroid (underactive) or perhaps perimenopause. I saw a cardiologist 7 years, and have frequent ventricular ectopy but was told it was fine, never medicated. Anyway, gp said my heart rate was 45bpm and wanted to do some tests. I see cardiology last week with results, who tell me I have heart failure - impaired LV function, severe dilated cavity, moderate mv regurgitation and ef of 36%.
He was really nice, but gave me 1.25mg of bisoprolol, said I was quite young, it's probably been caused by ectopics and he'll get another scan sorted and made me an appointment for April 2025! What am I meant to do? Are there things I shouldn't do? I was in and out in a few minutes. Ofc I've read up on it but all the advice says is to follow the specialists advice - but he didn't give me any. I don't even have the meds on repeat. Obviously I'm trying to make an appointment with my gp, but that's not easy lol will I get better? Are there things I'm doing that's making it worse? My bloods are fine, blood pressure fine, heart rate on the low side. Don't smoke, or drink. I have been incredibly stressed out, and I mean, gone through emotional stuff people shouldn't have too and had panick attacks and constant fight or flight anxiety for 2 years straight.
Sorry for such a big post, im not even sure if ive said anything lol I'm just feeling a bit scared and lost.
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I went for annual heart scans for five years. Nothing too bad. High BP but that’s just me. But the fifth year scan caused cardiology to leap in to action. Consultant rang me at home. Need a new valve. All action.
I am telling you this to give you faith in our medics. They really shift if things are life threatening. And cardiology departments for me were ace. Nothing like general hospital wards.
I will not read online medical sites other than BHF and NHS. Too much angst.
The one thing that you need to attend is your anxiety. Easily said but oh so difficult to do. Often anxiety leads BP but in your case not so. But perhaps you could start some self help. My favoured tip is to use a tinnitus relaxer. It’s simply sounds over white noise. That makes me relax rather well. Even gets me to sleep.
Relaxation courses might be available. Or meditation.
You are obviously fit and look after yourself. Well done, lots of gold stars. If you do need heart treatment your fitness will pay big dividends.
I'm really sorry to hear of your diagnosis, it is very scary to be told you have HF (heart failure)
And even more so when you're told it's severe. Fortunately today's medications are brilliant at helping your heart function better.
Have you been referred to a HF nurse/clinic? Under NICE guidelines you should be referred if they're available in your area. They will monitor you & advise what you should and shouldn't be doing, everyone is individual, some people with HF can run marathons, others struggle. If you haven't been referred ask why! Maybe look up the phone number of the HF clinic in your area and ask for advice.
Also, can I suggest you look at the Pumping Marvellous website for HF info, they are the UK's leading HF charity and are recommended by cardiologists & nurses worldwide, in fact you're usually given their pamphlets when you're initially diagnosed. I'd also recommend joining their Facebook group for support and advice from people who have, or are caring for someone with HF so they know exactly what you're going through. Lots of very friendly advice & support available there.
You could also contact the BHF nurses for advice, they're very knowledgeable, friendly & helpful. I'll find their number for you.
Edit: the phone number is 0808 802 1234 and the nurse are available between 9am to 5pm Monday to Friday.
Lots of us have been there. I developed a chest infection, and they found my E/F was 20%. Nobody thought to mention that normal was 50 -60%, not 100%. Medication and a pacemaker, and I am doing OK 5 years on. Heart failure is such a horrible term, when it just means slight inefficiency.
Feeling scared is a usual response to finding youy body is not in tip-top condition. If you are offered a cardio rehab course, I strongly recommend you take it, to meet others in the same situation, and get answers to your queries.
Thank you all for taking the time to reply, I really appreciate it! I haven't been offered anything yet, just the bisoprolol. I have read about cardio rehab and will see if I can access it, I think something like that would be really helpful, that and someone to chat too about everything. Thanks again for the recommendations, just knowing I'm not silly and others get it helps a lot ❤️
I found that you had to search for Cardio Rehab..then play the hopeless case..you then get in the “system” this was how referred to very good Heart Failure Nurse..I’d asked at GPs but never ever had appointment with doctor ..just others who didn’t know what I was talking about …
Heart failure is an awful phrase and should be removed from medical terms. There is a great post to further up this page with success stories. I went from EF 28%ans severe mitral regurgitation to EF 50%+ , mild MR in just 10 weeks with drugs and an ablation for my atrial Fibrillation
You sound like you need some good medical advice. Maybe more than this forum can give.If you were thinking perimenopause then I'm assuming you are pretty young.
It would be usual for ectopics to be managed by gp but heart failure at a young age, in my view/ experience, should / would be suggesting specialist advice.
You say you've had tests but you don't say which ones, unless I've missed that. Cardiac MRI is the gold standard for information about the structure and function of the heart. I'm late 40s and did have similar ef results to yourself from MRI. Around 40%, which was considered mild and asymptomatic. But we did discuss medication for it as a preventative measure. My HF was linked to AF and a successful ablation means I'm no longer in HF category otherwise I'd be on those meds now.
I wonder if a phone call to bhf helpline might be useful.
It feels like you need further information and some ideas about next steps that might be beyond your GP.
Hi, I have found that for stress, anxiety, and arghhh! in general, that using complementary medicines can help, in particular I use Dr Bach Rescue Remedy (and others as necessary), from Holland & Barrett, Baldwins, Boots, also Crystal Herbs are very comprehensive (on line). A visit to a Reiki practitioner helps (I have a monthly treatment), if any Holistic Fairs near you, then those are worth a visit, and usually very helpful people. Also helps to share your fears in discussion with friends and family.
I have started to look into remedies but never thought of Reiki but there is a practitioner in my village! Lol I've seen the poster in the shop. I'll absolutely check it out, thank you!
One thing you certainly shouldn't do is to put up with such detrimental stress without help from a licensed mental health professional who can provide stress management coaching or cognitive behavioral therapy. Untreated ongoing stress and anxiety ultimately lead to physical ailments. Has your cardiologist or GP felt that taking an ACE inhibitor like Lisinopril will help relieve the strain on your weakened left ventricle?
I told the cardiologist about the stress events and he just said OK. Don't get me wrong, he was nice, but he didn't say anything to me. He told me what the problem was, to take the bisoprolol and he'll make me an appointment for a later date while refering me for. CT scan. Reducing the stress has been my priority since, but it is difficult. I need to go to my GP and get some clarity I think
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