Our community is a place for people affected by heart disease to find support and information.
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Jo_BHF
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Nice to see this post. I'm living with the dreaded heart disease. I'm 39.. been 2 years now, 1 stent. People say I'm young, the way I see it is their are younger than me. Cant thank the doctors and nurse's enough for everything they do.
I’m 48 too, had a stent fitted last Thursday. Only knew I had a real problem 2 weeks ago.
My wife and I were both terrified as well but I feel so much better now. I can sympathise with you but stay strong it really is a straight forward process.
Daren
Thank you for welcome. It is myself that has heart problems. I like to read others experiences and to offer support when I can. X
Thank you. I have just joined today. I don't feel so alone with my diagnosis, and all the baggage that comes with it.
Thank you for the welcome. I have had three heart attacks and three stents; at the moment there have been some changes in how I feel and various things are being tried so I know that should I have any queries (for reassurance) I'm in the right company.
Hi Ceed - we do indeed. You can find information on our website, as well as information about some of the research we've funded into the condition: bhf.org.uk/search/all?keywo...
Hope that helps - remember there's always our helpline if you'd like to speak to one of our cardiac nurses too: bhf.org.uk/heart-health/how...
Sorry, I've just read these guidelines and unfortunately I did post my private email address yesterday to Numberone1 - I didn't know there was a private message option. Would you be able to remove it for me please? Numberone1 hasn't replied. How do I do it privately if I choose to. Thanks and apologies once more.
No problem at all Margaret, it's easily done! I've removed that for you
If you'd like to message someone, just click their username to be taken to their profile page, and then you can click the Message button on the right hand side.
Thanks for welcome I had a dual chambchamber pacemaker fitted three weeks ago due to sick sinus syndrome. I expected to feel better immediately but still not back to how I was before how long does it Take?
Hi there - sorry to hear you're still not feeling 100%. It can sometimes take a month or two for your heart to settle and get used to a device that's interrupted its electrical activity. If you're still concerned you can ask your pacemaker clinic to check your device's setting to see if they can be tweaked to better suit you. This is painless and usually quite quick to do.
I had a heart attack 5 months ago and still feel terrible, jaw pains, arm pains, tight chest etc but the Drs keep telling me there's nothing wrong MRI is fine stress echo is fine. I'm terrified that the stent is blocked or failing I can't go on like this does anyone have any advise for me? could it be side effects? Ste 32.
Hi, found this community and hoping I get some advice.
I had a dual chamber pacemaker fitted end of August due to SSS tachy/Brady syndrome.
I expected to be 'fixed', and although the syncope episodes have stopped, I still feel very faint, palpitations , fatigue and chest pain and nausea from time to time.
I started back at the gym as was told there were no limitations now and to continue as normal.
How come I don't feel better? Is this normal? My pacemaker is set on demand, to 60bpm. I have had no advice or support since having it fitted. I tried the pacing clinic however they just said pacemaker is working fine and were of little support.
I am not on any medication. Prior to pacing Bisoprolol made symptoms worse so was stopped.
Thank you for allowing me into this forum. My husband has heart failure and AF. he is feeling very fatigued at the moment and so far refuses to see the Dr.
I was due a hip replacement and had an ecg, it found there were problems and need to be referred to a cardiologist. I thought I had no symptoms and put the pains I get as indigestion and my overheating, nausea and light headedness down to my diabetes, now I’m really worried it is probably my heart. I don’t see the Cardiologist until March 16th. I’m going to be a nervous wreck by then. Do you think I have any need to worry?
I joined in Jan. 2018 and have leaned so much. Can't wait to turn my computer on every day and read about all the helpful info about great suggestions on health problems and all the different meds people are taking. Very reassuring. Anna
Hi Jo, a few times I've commented on posts & referred people to a closed Facebook group called pumping marvellous that is specifically for people with heart failure, their carers & family. I'm a member of the group & it's helped me considerably, but now I'm wondering if I've broken your policy rules by doing this. Can you advise? Thanks
Hello I'm 29 years old, im waiting on open heart surgery to repair my mitral valve I'm terrified about surgery. Im praying it will be a repair and nota replacement as I'd love another child.
Did you have a repair or replacement? ,I had mine repaired in2015 but is still leaking I've had checks and is if gets worse to be replaced I'm 25 now it was a week before my 21st had mine repaired not the 21st I wanted!
My Nan had that after she had a Heart Attack according to medical report but with research seems like something you'd have before a Heart Attack like that's what causes it.I have a Heart Condition know instead of thinking I just got from Birth due to the carrying wondering if more hereditary
Thank you for inviting me to join. I had a heart attack almost a year ago I had an emergency stent fitted.I like to read about others in the same or similar boat.
Many thanks for the message and yes am living with congenital HD and afib with leaking heart valves. Already in receipt of the Heart Matters magazine which is very helpful. Able to cope very well with the symptoms at present and operation due last year has been suspended.
Hi, have you spoken to your cardiologist? An ICD may help to save your life in an emergency situation so very useful to have! These are not fitted unless there's a very good reason for it & it may be a case of your heart doesn't need pacing. However, if it does then a lot of ICD's also pace. The hospital has recently talked about inserting another lead from the ICD to my husbands heart, to start pacing it. Probably best to speak to your medical care team.
Hi, thank you for accepting me. I don’t know if I am in the right place here. I have had thousands of ectopic heartbeats every day since November and just had an echo. That doctor said my heart was fine. I go to see my doctor next week for the full results and might have to see a cardiologist. Is it normal for my blood pressure to go really high and then really low, same with my heart rate? I also get very breathless, feel very lightheaded and nearly pass out. My legs feel very heavy if I am able to climb stairs. I was supposed to start on beta blockers to regulate my heartbeat but the doctor said they would make my symptoms worse. Not taking anything at the moment. Has anyone else experienced this or can anyone point me in the right direction please? Thank you.
I am getting pauses which are concerning him but he needs to see more than the written report. No idea when I will here back, hospital wheels turn very slowly !
Do you ever have 3 beats all in a row, without a break? Or times when your pulse seems to fade away or slow right down? I get these. Since New Year’s Day, when I hurt my back, I have not been able to do anything. I basically just rest on the sofa all day. Am having an x ray on my back tomorrow as I might have fractured a vertebrae. Due to not doing anything my blood pressure and heart rate have stabilised. Before Christmas I really thought I was a goner, so breathless, lightheaded and ill. Could only just walk from room to room. Everything was so erratic. I hope they get you sorted out very soon.
Yep and have done for years but always told nothing to worry about, I generally have a fast heart rate but all over the place sometimes, this Cardio is the first one to show any interest but I'm not banking on a solution !
I had all those symptoms 8 years ago.Had a pacemaker fitted which helped a lot but it did take ages to get a diagnosis so keep going back to the GP and tell him/her how worried you are.
As I said above I cannot tolerate a diet high in fruits and veg, it's just not possible.
I've just posted my first post and received an email from someone about it. I thought this was a forum, how did this person post me an email to my personal email address?
Hi thankyou for letting me join this site. My mum has been diagnosed with mixed dementia (vascular dementia + alzheimer's) recently. I have already had a really helpful replies. I have joined to get more information about it and real life experiences of it to help us all gain more knowledge. All my replies I have received are from really helpful and caring people who genuinely want to help me. They have already made a difference x
Thanks for the welcome Jo, not new to BHF get the newsletter, donate through that, Been 10 years since Heart attack, Stents have 10 year lease I Had better watch out then
Hi I have had an angiogram this week but due to small arteries in my arm they couldn’t fit my stent . So going back in 2 weeks . Hopefully life will be easier
Hi, thanks for letting me join the forum. I’m 42 and have been in hospital for 3 weeks with acute infective endocarditis. At first it was a mystery as to how I was susceptible to the illness, but last Thursday I was diagnosed with congenital bicuspid aortic valve. The valve is leaky and has been damaged by the endocarditis, and right now i’m waiting to hear whether the doctors decide to get rid of the infection first and then replace the valve, or operate to replace the valve and remove the last of the infection ASAP. I’m going to have an artificial valve. I’m very nervous, so thanks for listening.
I was diagnosed with AF about 2 years ago. I'm getting over the shock but unable to lose weight as I work long, sedentary shifts and get breathless when exercising.
On 3 tablets to control bp, hr and cholesterol but have resisted GP suggestions to start blood thinners yet.
I'm hoping impending early retirement will change my life for the better later this year.
I travel a lot too so don't want even more insurance woes!
I am still uneasy about members giving medical advice. This particular member can sound very authoritative and does occasionally slip into giving such advice.
I’m pretty sure that’s not what your brilliant service is for?
For example I read their message today .....
‘I personally think a reduced dose would be a better way than either taking a "holiday" or missing days.’
The members GP had advised a ‘holiday’ from statins.
Thanks Milkfairy. I have before, with the same worry, and, mistakenly, thought I was messaging Helen, an administrator today! I’m not that efficient on this site!
Any guidance on how I should message the right person?
‘I am still uneasy about members giving medical advice. One particular member can sound very authoritative and does occasionally slip into giving such advice.
I’m pretty sure that’s not what your brilliant service is for?
For example I read their message today .....
‘I personally think a reduced dose would be a better way than either taking a "holiday" or missing days.’
The members GP had advised a ‘holiday’ from statins.
Thank for the welcome. My husband has just had a pacemaker fitted after several years of living with atrial fibrillation. I'm here to learn from others how best to help him get fit again
Hi. I found HealthUnlocked 7 years ago after my leukemia diagnosis. Tho this CLL community has a British flavor it is int'l in membership with a large contingent from my country, the U.S..
Last year I got the morbid news I had become co-morbid being diagnosed with coronary artery disease (bypass surgery last October) and I find these days I have more questions and thoughts around my CAD than my CLL.
Just wanted to find out if BHF had many American members. Cause if not I'd make sure to keep my Medicare and other U.S.-centric comments out of the community. I can be a 'lookie lu' (oops.. that's US-centric, think it's nosy Parker for you).
Anyway this is the community that fits best despite the national association. The only other one that focused on heart disease was a bit too bit narrow in focus with the sole mission to discuss the evils of salt.
Hi , my husband has recently had a heart attack and had a quadruple bypass all in about 3 weeks . He is only 57 and never really been ill in his life ,so as you can imagine it had come as a bit of a shock and I feel as I’m helpless and floundering. Hopefully I will get some good helpful advice from this forum. Thank you .
Hi all I’m new here, I suffer with ARVC I was diagnosed in April after suffering VT, I’ve had an icd fitted and after 6 months it showed I had a few episodes in one day which worries me. Since then I’ve been worried to overdo anything but also aware that I need to keep fit and improve my cardio, I have joined a gym and was wondering what advice anyone could give me regarding what exercises etc would be beneficial and is it ok to go swimming as I’ve read that the pools can affect the device. Tia
Hello, have you tried looking under 'Conditions on the British Heart Foundation site? I have had left ventricular impairment diagnosed by an echo. It's very frightening at first when you here these long words used and it's not properly explained to you what they mean. I think your cardiologist or GP, which ever you feel you have the best relationship with, to explain what it means - it may not be anything to worry about. I know at the moment it's not easy to get an appointment just like that, but they may be able to offer you a telephone appointment. Or you may prefer to wait until this COVD-19 has settled down. My GP is giving phone appointments at the moment before deciding whether they need to see you face to face or not. I spoke to mine about my meds needing renewal on Friday and she agreed to do it for me without seeing her. Or the BHF nurse can answer some questions for you if you look on her British Heart Foundation site. Take care and I hope you get things sorted.
So glad to find this site. I had to have a shock and emergency triple bypass last year at 58 years old when, after an Nstemi heart attack they found I had familial hypercholesterolemia which had caused blocked arteries of up to 95%. I had only had a heart test a few months before and was told my heart was fine. It was of course, because it was actually my arteries that were the problem. Although I was too heavy I had never smoked, or drunk and ate healthily but, with the condition it turns out as I was told that, even if I had been a healthy marathon runner I would have ended up in the same place as it was familial. My mamma, mum and brother all had smoked and ended up with diabetes but thought it was caused by what the doctor called lifestyle factors and my mamma suddenly had a massive cornonary in 1978 and died instantly, my brother passed away suddenly three years ago at 59 and my mum had to have a triple heart bypass in 1990 and lived for a further 10 years but none of them knew about the condition which they had so, apart from diabetes medicine and in my mums case warfarin, weren’t taking some of the medication I have since been given. As it’s a direct descendent genetic condition we have had to have our direct children tested and my brother’s daughter of 32 years old also has it and is receiving statin and other treatment to keep the illness at bay. We are all still in shock and are trying to understand the condition - and, in my case, what I should do to learn to live with my bypass. The sudden shock and fear caused by everything that happened has also left me with anxiety and AF so I am so glad to have finally found a site which may be able to assist or at least help me understand thinks better.
Hello Trog1, sorry to read about your health issues but you are definitely in the right place here , I had a bypass and aortic valve replaced nearly 4 years ago, and can understand that your head will be all over the place. It takes some getting used to being a heartie! First have you been to cardio rehab? With the situation at the moment I know they are not running many, but once things have got back to normal if you haven’t been it’s something you should look into, apart from getting your stamina back you will be mixing with other people who have had similar experiences and that really helped me get my head round what had happened to me, and helped my mental health. Those little aches and pains you are having suddenly you realise others have them too and you feel ok that’s normal.
As for living with your bypass well a healthy diet lots of us here follow a Mediterranean diet recommended by the bhf exercise and if you smoke stop!
What you have to remember is you heart as been mended and you have like me been given a second chance. It’s onwards and upwards!
Thanks so much for your swift response. It’s 10 months since my op now and I have such help from the nhs it’s unbelievable. After spending a month in total in hospital from diagnosis and then being advised to wait in hospital for my emergency scheduled op (as I had had an Nstemi) they then found I had AF and gave me apixoban for life as a precautionary measure and high dose statin (for the cholesterol) plus low doses of bisopralol and ramipril to assist my heart even though I don’t suffer from high blood pressure. On leaving hospital I had a couple of AF attacks for which I attended A&E and the Bisoprolol was raised to 2.5mg to help slow rapid heart rate. The cardiologist recommended I self refer for counselling as he felt anxiety was part of the problem which made the AF worse. Since July I have done my cardiac rehab who then referred me to an appropriate cardio class through my local council. in November I started with a counsellor whic, due to Covid19, had to stop. Still on Bisoprolol 2.5 my Dr is monitoring whether or not to lower to 1.25 as I still get some paroxysmal AF but have a good heart rate with quite a low resting rate of around 52 to 55 bpm but,again, due to the pandemic this will have to wait until things return more to normal as he doesn’t think it is too worrying - it’s just a case of he doesn’t want to lower the dose and my AF get worse. Since my op I have lost 2.5 stones in weight and eat very healthily and avoid many fats and also processed sugar. I have never smoked. As my surgeon said my good diet helped my recovery but, in the circumstances, could not have prevented the problem. That has had to be mended by the surgery and if I take care there’s no reason why I shouldn’t lead a pretty normal life and span. Even though it didn’t feel that way last when my bombshell dropped last year, I realise how lucky I am to have found it and get treated. AlI need now is time, help and reassurance to help me understand and come to terms with the condition and rebuild my life and confidence.
Hi everyone I'm pleased I've found somewhere to come and get support from people going through what I am . I had a double heart bypass seven weeks ago and going through so many different emotions . I have suffered heart problems for the last two years years first heart attack had a stent but still was in.and out of hospital nearly every month hence now the bypass it will be good to be supported thanks x
Welcome to the forum I had Aortic valve replaced and bypass 4 years ago. We have a range of heart issues and are always willing to help where we can, to lend a shoulder to lean on when the going gets tuff or an ear when we just need to talk.
Hope your recovery goes really well remember it’s baby steps and being emotional is also par for the course, you have to let your brain catch up to what your body as been through.
Hi Jo. My situation is probably similar to lots out there. I have had 2 blood cots in the heart, 2 cardioversion, CRTD fitted. 1 cardio ablation, my ejection fraction is 15 to 20. And I am in constant afib. I am currently on the urgent list for another ablation. I read different things on line suggesting I have between 2 to5 years to live.. what would your prognosis be. Kind Regards. Phil
Hi - my husband had open heart surgery in February and doctors aren’t being overly helpful regarding medication. The medication is making him feel worse than he should do but he is finding it a struggle to get the best help. Is there anyone he could speak to or anyone who has a suggestion on what to do next
You don’t say what medication your husband is on, I had my bypass and aortic valve replaced 4 years ago, and it took at least 8-10 months before I had my stamina back, though even now I can’t do what I use to do but I put that down to getting old! you say the medication is making him feel worse, is he still under the cardiologist or as he been discharged back to his GP? What ever medication he is on have you read the patient notes in the box, this might give you an insight into the side affects he might encounter, I was put on one that gave me a really irritating cough surgeon changed it and cough disappeared.
Try speaking to the cardio nurses here on the BHF website they are really helpful. Telephone 0300 330 3311
Hi, it was Ramipril that caused me the cough it seems lots have the same thing, changed me to Candesartan haven’t had a problem with that. There are some on the forum who have a problem with Bisoprolol but I seem fine. I have aspirin 75mg plus Furosemide.Hope you can get some information from the nurses here,
thank you for allowing me to join, I have had myocarditis in the past and my Mum has had a few heart attacks and has an enlarged heart. I could really do with lowering my cholesterol as it is slightly raised.
HiThanks for providing me opportunity to share my Cardiac history and find a best advice to control my cholesterol. I am 48 and had STEMI in August 2018. One RCA was blocked and stentes during the procedure. Doctor prescribed me following medications. Rimiplich, Bisoprolol, Aspirin and Statin (Atorvastatin 40mg). After some days i have sent to the rehabilitation centre. A cardiologist doctor changed my Atorvastatin 40 mg to Rosuvastatin 10 mg. He said that your LDL level should be less than 70 and Rosuvastatin 10 will work more effectively, i was surprised that if Atorvastatin 40 mg didn't reduce the cholesterol level than how can Rosuvastatin 10 mg will work, but it worked and my LDL dropped dramatically. But after 2 years my consultant changed Rosuvastatin 10 mg to Atorvastatin 40 mg and result wasn't satisfactory, now I am again on Rosuvastatin 10 mg but needs to take another blood test to varify the result.
Meanwhile i had CT Angiogram and result was following;
Anomalous origin of the circumflex artery which arises from the right coronary artery and has a retroaortic course.
The right coronary artery is dominant.
LAD: Diffuse atheroma within the proximal LAD but no significant stenosis.
LCx: Anomalous origin with calcified plaque proximally, but no significant stenosis.
RCA: No significant stenosis. Stent within the mid RCA. No significant in-stent re-stenosis.
PDA: No significant stenosis
PLB: Atheroma but no significant stenosis.
Low attenuation within the inferior wall which extends into the inferolateral wall compatible with RCA territory infarct.
No focal lesions within the visualised lungs.
Can anyone advice, how to reduce cholesterol?
I also request you to guide me about the result of CT Angiogram?
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