BHF's Community Guidelines: Our... - British Heart Fou...

British Heart Foundation
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BHF's Community Guidelines

Jo_BHF
Jo_BHFAdministrator
77 Replies

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

- Recommend that anyone stops taking medication without talking to a healthcare professional first, or give healthcare advice. (We have a duty of care to all our members, and every individual should work with a healthcare professional according to their personal case history. If Admins see anyone persistently putting forward their own opinions in the form of urging or advising others, they will post a warning to that user. Continued breaking of this rule may result in restriction from our community.)

- 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!

77 Replies
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Anakinattack38

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.

6 likes
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gemma29806

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

4 likes
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chrissy33

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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Dhomewood
Dhomewood
in reply to chrissy33

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

3 likes
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trishel8

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

1 like
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Bee70

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

2 likes
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annasan

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

2 likes
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roundthehorn

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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skid112
skid112Heart Star
in reply to roundthehorn

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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Ceed

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

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Jo_BHF
Jo_BHFAdministrator

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...

1 like
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MKB38

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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Jo_BHF
Jo_BHFAdministrator
in reply to MKB38

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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MKB38

Thank you so much. M

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HeatherForanSmith

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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Hidden
HiddenAdministrator
in reply to HeatherForanSmith

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

1 like
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HeatherForanSmith
HeatherForanSmith
in reply to Hidden

Thanks

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Hidden
Hidden

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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Maisie23

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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summer49

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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DiB41

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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Lizziecb1

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

1 like
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Jo_BHF
Jo_BHFAdministrator
in reply to Lizziecb1

Very glad to hear that, Lizziecb1! Welcome :)

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Coougar
Coougar
in reply to Jo_BHF

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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Coougar

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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Lezzers

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

1 like
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skid112
skid112Heart Star
in reply to Lezzers

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

1 like
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Lezzers
Lezzers
in reply to skid112

Thank you

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BeesMV

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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HeartMatters

Sound

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MK1954

Hi Jo_BHF,

Can you explain what Ischaemic Heart Disease is please.

Thanks

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Jo_BHF
Jo_BHFAdministrator
in reply to MK1954

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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Pepperoreo

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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Jo_BHF
Jo_BHFAdministrator
in reply to Pepperoreo

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

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brads27
brads27
in reply to Pepperoreo

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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chrisgrannyUK

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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acstilliard

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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brads27

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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Hidden
Hidden

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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Jamzy28

I think I have cardiomypathy can you help me please

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Milomegan

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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Lezzers
Lezzers
in reply to Milomegan

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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Trevor86

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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Cornishblue

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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bantam12

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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Cornishblue

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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bantam12

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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Cornishblue

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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bantam12

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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Concerned
Concerned
in reply to bantam12

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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bantam12
bantam12
in reply to Concerned

Sorry but I dont understand what you are saying.

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Concerned
Concerned
in reply to bantam12

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

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bantam12
bantam12
in reply to Concerned

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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Concerned
Concerned
in reply to bantam12

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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bantam12
bantam12
in reply to Concerned

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

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cowparsley

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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Hidden
Hidden

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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68Michelle

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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aqualates

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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DavidMill

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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Lozy92

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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Amikatari

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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Stueeee52

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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Kristin1812
Kristin1812Heart Star

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.

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Milkfairy
MilkfairyHeart Star
in reply to Kristin1812

Hi Kristin 1982

Have you told admin about your concerns?

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Kristin1812
Kristin1812Heart Star
in reply to Milkfairy

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?

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Milkfairy
MilkfairyHeart Star
in reply to Kristin1812

At the bottom of the reply someone has written next to Reply is 'More'

Press the More button and then you can raise your concerns with admin.

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Helen_BHF
Helen_BHFAdministrator
in reply to Kristin1812

Hi Kristin, feel free to drop me a message!

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Kristin1812
Kristin1812Heart Star
in reply to Helen_BHF

Hi Helen. My concern is as follows:

‘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.

I’d be interested if you are happy with this?

Many thanks.

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Helen_BHF
Helen_BHFAdministrator
in reply to Kristin1812

Hi Kristin, I've sent you a personal message about this. Thanks!

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Kristin1812
Kristin1812Heart Star

That’s really helpful. Thank you lots. Kristin

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Tina2008

So refreshing to know this site is here, Thank you

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Folding

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

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gemit2000

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.

Thanks, be well,

Gene Mitchell

Orlando FL

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whywouldi

Anybody know what the best alternative to Amlodipine is.......I Am constantly tired on this med and dizzy

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Oggyogg

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 .

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