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British Heart Foundation
10,345 members6,273 posts

BHF's Community Guidelines

Our community is a place for people affected by heart disease to find support and information.

The BHF team is here to support you and answer your questions, but please remember that any specific health questions should be taken to your doctor or specialist. If you have an urgent health issue call 999 or NHS direct on 111. If you'd like to have a chat with a cardiac nurse or heart health adviser please call our Heart Helpline on 0300 330 3311, open Monday to Friday from 9am to 5pm.

When using the community, please do not:

- Post material that is indecent, racist or defamatory, harassing, threatening or abusive towards another community member. Please be aware that any user that posts anything of this nature may have their account restricted and will be unable to post on the community.

- Recommend any extreme lifestyle changes to other community members

- Post real names of the doctors or nurses treating you, or specific hospital teams.

- Post personal details of others, known both within and outside of the community

- Post anything that could be interpreted as self-publicity (including spamming – posting the same or similar message in many discussions), advertising (including pyramid selling and chain letters), selling or soliciting. If you’re discussing fundraising or events for us, feel free to add links where appropriate.

- Post any third-party surveys, polls or material that infringes any legal rights – for example, copyright or other proprietary rights

- Post private email addresses anywhere in the community. There’s a Private Message function, which is very useful if you’d like to talk to a member of the community on a one-to-one basis, and is a more secure way to share email addresses.

Community tips

Privacy settings - setting your post to private will mean your post is not visible to people outside the community. It can still be picked up by Google search however the full post will not be visible. More on this here: healthunlocked.com/policies...

Using community topics - when you create a post, you can also assign it to a relevant topic. If you'd like a response from a BHF admin or nurse, tag your post as 'Ask the BHF' and someone will respond as soon as they can.

Titling posts - when creating your post, it's worth giving it a clear title that indicates what your post is about. This means you're more likely to get a response, especially if you're keen to hear from others.

We want our community to be a welcoming place, where members feel safe and supported. If you have any questions, or ideas for how we can improve the community, we’d love to hear from you!

63 Replies
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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.

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Thank you for letting me be a member. I`m waiting for an operation on my heart and thought i would like to join.

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My hubby just been diagnosed with chd at 48 . He's not taking it well at all. I'm stressed he's worse.

His arteries 90%blocked !awaiting sent

Still haven't seen a consultant as it's all been so quick

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Hi Chrissy

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

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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

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Thank you. I have just joined today. I don't feel so alone with my diagnosis, and all the baggage that comes with it.

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Welcome Bee70! It's comforting to read other posts and experiences of heart problems. Makes one feel part of a community who understand our fears

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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.

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A lot of very helpful people here, some will have gone through similar to you and are more than happy to relay their experiences

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Please tell me if you cover the condition I have which is Peripheral Arterial Disease (PAD).

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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...

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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.

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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.

Jo

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Thank you so much. M

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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?

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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.

Hope this helps, Chris

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Thanks

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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.

Thanks

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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.

Can anyone give me any advice please?

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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.

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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?

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Thanks for allowing me to join. I already have the heart matters magazine its been very useful.

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Very glad to hear that, Lizziecb1! Welcome :)

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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

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Please Help. I am trying to finish my profile but my postal code is not accepted. I live in Canada. Thanks. Anna.

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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

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Hi lezzers, I dont think you have breached any rules, its always good to know of other groups out there that are useful

Thanks

Mark

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Thank you

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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.

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Sound

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Hi Jo_BHF,

Can you explain what Ischaemic Heart Disease is please.

Thanks

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Hi there - here's some info on the BHF website all about ischaemic heart disease, which we now call coronary heart disease.

bhf.org.uk/heart-health/con...

Hope it's useful,

Jo

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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.

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Welcome, Pepperoreo! Hope you're doing well :)

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I had an heart attack on the 9th September,I had 6 stents put in,I feel a little breathless at the moment.

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Thanks for adding me. I think I might have joined twice by accident!

I had an MI 15months ago, also have CLL and a bad hip and knee after a RTA in 2001.

Sometimes wonder what to complain about first!

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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.

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Hello,I had an heart attack on the 9th of this month,I have had six stents put in and now feel a little breathless,is this normal?

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Thank you

I have heart failure ef 10% and few other problems lol and a Boston defibrillator I have major diff getting rid of water even with meds

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I think I have cardiomypathy can you help me please

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Would like to know if it possible for me to have i.c.d removed and replaced with just a pacemaker.

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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.

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Hi Jo just joined I have been in af over a week I'm on tablets and awaiting an ablation is this normal to be in it over a week

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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.

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I have the same, my Cardiologist is re checking my echo and monitor results but looking likely a pacemaker will be needed.

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Hi, did they say what exactly it was? Will you have a long wait for it? Hope it all goes well for you.

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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 !

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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.

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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 !

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Carbohydrate is used for intense activity. In excess it is therefore excitatory.

Natural fat is relatively inert, and of course improves insulation/conduction!

Protein is about half-way between the two.

Solution...

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Sorry but I dont understand what you are saying.

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See my reply at the bottom of this trail healthunlocked.com/bhf/post...

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I don't have diabetes, my levels are normal and that diet is not possible for me as I have ulcerative colitis but thanks for the thought.

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I appreciate that you don't have diabetes bantam12, and hopefully you never will. This is quite a liberal way of eating, and I think with your knowledge and experience you could avoid agitation and flare-ups as well as you do now, if not more because insulin and IGF-1 cause inflammation.

The key point is that your blood glucose is normal because you have high insulin levels to keep them that way, and things will get worse as the insulin-resistance produces more visceral fat, inhibiting the action of the insulin in the cells where it is needed, causing higher and higher amounts of insulin to be produced adversely affecting other areas.

I can only begin to imagine how your faith in dietary solutions has been dampened by ineffective changes that are generally futile (or detrimental, such as lower-fat dairy/alternatives, and/or cutting fat from meat), based on flawed theories. The difference is that, were you to try, the ICS-NHS DPP approaches actually work.

Good luck!

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As I said above I cannot tolerate a diet high in fruits and veg, it's just not possible.

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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.

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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?

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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

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Thank you for letting me be a member, I don't know why I didn't join earlier as I've had AF since 2015.

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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

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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

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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.

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Hi, Thanks for the welcome!

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!

Regards, Stuart

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