British Heart Foundation
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Uhh... what's happening to me?

Hi, I'm Richard

After feeling a bit sweaty and hurty tummy in October i reluctantly went to A&E and was sent straight to Harefield Hospital where it turns out i have LBBB and Severe Heart Failure. Handfuls of daily pills later i'm on a waiting list for CRT-D pacemaker.

It's all come as a bit of a shock and i'm looking for people in a similar spot or who have been through a similar experience to chat with. I have chatted with some healthies and just get lots of joking or chin-up type comments.

Mr Google says i'm going to die so thats no help.

I'm generally fine day to day but its all coming at me a bit fast.

Thanks in advance!

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Hi Patrick, thanks for the note! It seems like a nice place, I'm there again tomorrow for an Echo.

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Hi Richard, welcome to the forum and sorry to hear about your diagnosis. There are a few threads on here you may find of some help

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

a number of our lovely members have pacemakers and doubtless some will be along shortly with their experiences, you might also want to take a look at the BHF website who have a number of articles on heart failure, here is one bhf.org.uk/heart-health/liv...

plus they have a helpline 0300 330 3311 if you wish to speak to someone

hope that helps a little

Mark

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Hi Richard

Did Dr Google give you some idea of when you will die ??? 5 10 15 20 years it's the worst thing about Heart Failure we are all told it is Progressive, but no one knows how it will Progress !!!!

Like yourself I was diagnosed out of the blue with H F after having a double by pass I have an ECG which is in a LBBB pattern. I do believe that CRT-D is a good way to go, and a good option !! Only a personal opinion though.

Regards

Frank W

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Thanks Frank, I’m just full of stupid questions like does the CRT-D vary it’s rate or stay on a single beat no matter how much activity.

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Hi STA4,

I am in the process of getting a CRT-D implanted. Like you I have severe HF but a different kind from you. You will get details from my blog but lets see if I can condense this into a couple of sentences.

My understanding is that, for me, the following is applicable:-

The CRT Pacemaker Unit comes with and with or without a Defibrillator installed (CRT-P or CRT-D). I have a CRT-D.

The CRT-D unit is about the size of an old pocket watch and is hardly noticeable when it's fitted into your upper left shoulder.

The CRT-D unit will have 3 leads one to the right Atrium and one each to the Ventricles.

Once installed and running perfectly they will surgically remove my own natural pacemaker (a procedure known as a AV Node Ablation) leaving me fully dependant on the CRT-D box. (This is the bit that freaks people out).

The CRT-D unit will stop your heart rate dropping below a pre defined limit. Mine is set at 60 BPM. It will also recognise when you need additional puff and increase the heart rate accordingly.

The CRT-D will also defibrillator you should you slip into a predefined arrhythmia. Mine is set to fire when I get a Ventricular Fibrillation arrhythmia at a rate of 220 BPM. These two boxes need to be ticked before the thing fires.

My unit has been in and working since 31 October 2017. It is currently kicking in 68% of the time but I have been informed that it needs to be working 80% + before I will notice any difference. Not that it matters as when I have the AV Node Ablation it will be working 100% of the time. Essentially, I will be replacing a dodgy natural pacemaker with a brand new electronic version.

Those who have it say it's a life changer and I'm hoping for supper hero powers once I have my AV Node Ablation and the CRT-D unit kicks in full time.

Be careful with Dr Google, there is a lot of old or misinformation about. The best advice I got was that the heart is a big muscular pump and in some people it needs a little help. I have a problem with the electrics - so they find a way around the problem and then you are back online again. One thing is for sure once in the NHS system they will be keeping an eye on you and your heart, so better protected than many.

Regards

Ogilvie

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Hi Ogilvie,

That’s the best explanation I’ve ever heard, you must be a teacher!

I’ll check out your blog.

R

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Hi R,

I have no professional qualifications at all - this is just my understanding based on whats happened to me. Like everyone else, I'm still learning.

Cheers

O

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Hi Richard

Sorry to hear about your recent prognosis.... and I am sure you are still reeling and in shock . It's a scary time of course, however I just wanted to let you know that there is life.... and a good quality of life... after this type of diagnosis.

I too have severe heart failure... I was recorded at 30 following my echo ( anything below 35 is recorded as severe heart failure) have you been given your echo number. It helps to focus on where you are... so that you can track how the heart is performing as a comparison going forwards.. .. and there is a possibility that your number CAN increase.

Ok so I was diagnosed with heart failure after a large heart attack 22 years ago. And here I am all these years later... having had a busy career and bringing up my child... all good there.

So in feb last year I was also diagnosed at severe leave. It is scary however I look at it that I am lucky that this has been identified and so can be dealt with. So I had a CRTD implanted in September of this year.

This device delivers an electrical impulse to my left ventrical ( the damaged part) to keep it regulated and to keep the heart pacing ( no irregular heart beats) this pacing is done 100% of the time.... and wow do I feel better! No palpitations.. . I have much more energy and I am due to have a new echo in June.. . To see if my overall heart performance.. . That 30 number has increased. By having the pacing device I like to look at it as this is giving my heart a helping hand and keeping it regular helps improved blood flow and improved health. I have also been told by my doctors that this device stops the heart deteriorating further... and can sometimes help repair the heart

It's a win win situation !

They have started to give this device to patients at an earlier stage of deterioration and this has led to a lot of people having a much better quality of life.

On a separate note another couple of things outside of the medical side... but which I think are very important is

A) a positive mental attitude. Of course you will be worried but if you can focus on positives it really does help you to cope physically. And you mentioned about dying.... look at it this way... we are all going to die.... do any of us want to know when. Of course not. So I always say not today... it's stood me in good stead for all these years. And I am focussing now on the next 20 years.

B) looking after yourself... try to eat healthily ( and of course have treats too) but I look at taking back control by choosing healthy diet and very little alcohol or caffeine. I limit myself to 2 cups of tea a day.... I now drink squash for the rest of the time. This helps my heart. Caffeine is bad for the heart. Also don't get decaff as my doctor said this is even worse!

So focus on eating healthily ... my meal times are tastier than ever.... fish and chicken and lots of veg and salads and fruit.

Also was recently told raw honey protects your heart... and can even aid some repair to the heart. So I found a beekeeper and now have a teaspoonful a day.

As well as diet exercise is also important... so once your device is fitted then after 8 weeks you should be fine to start an exercise regime.

Richard if you have ANY questions please don't hesitate to ask me it would be a pleasure to reassure you and help you on this journey.. .. I have named my device Kurt.... you may want to think of a name for yours 😀

Karen

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Hi Karen ( and Kurt ) thanks for the info. My Echo measurement was 26 last time and I had it measured again today (but wasn’t told)

It’s reassuring to hear all these great and positive personal experiences!

R

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Hi Heartlady1, that's a great story! I have some fibrosis in my right ventricle and a CRTD has been mentioned as something for the future, sooner or later. It's great to hear you're doing so well. Could I ask you about the point you made about coffee/decaff being bad for you? I read recently that coffee was meant to actually be good for the heart, even as decaff? Did your cardiologist say why coffee/decaff was bad? Thanks.

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I’m actually going to ignore the coffee recommendation otherwise there’s no reason to go on 😜

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Ok so the issue my doctors are telling me 're coffee is

A) it has no goodness in it whatsoever ( my GP words)

B) The caffeine makes your heart race... so if you have an irregular heart beat.... it's making it work harder and could then potentially make the imbalance worse. ( I do have the occasional coffee now but I go for mild rather than strong.

C) apparently the substitute chemicals added to decaff are even worse for the heart ( again from doctor.. .. after I had bought decaff ! .... he didn't go into further details on this)

I do drink tea... but now limit my intake. I look at it that if doctors ( including my cardiologists) are advising against then I am happy to take their advice. I did see the coffee promotion about coffee being goofd for heart and strokes... this was promoted on tv .... I am sure they want us to buy more coffee! But I did think it was dangerous to come out with these nonsensical claims... which can lull people into a false sense of security.

I just limit my intake ( knowledge is power) and currently sticking to my healthy focus... on the hope my number goes up.... if it does I will let you all know.... and honey may be the way forward 😁😁

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I studied chemistry at university and there’s more caffeine in tea than coffee!

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There is Richard.. . I agree and have been told to cut down my intake due to the caffeine. However all the dr's from my go up to my consultant tell me that coffee is worse for you.. .. so I just go on their advice. It may be worth checking with your own dr's for advice on this matter.... as we are all different and I would say whatever they say.... follow their advice. Not a big deal.. .. for me I just want to focus on the stuff that keeps me healthy and happy ( and have a little cheat every now and again) 😁😁

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From my QI viewing (ha!) I remember learning that there is more caffeine in tea than coffee in terms of amount of caffeine per kilo (for example) but there is far more caffeine in a CUP of coffee than a CUP of tea, hence why tea would be preferred. Nobody has ever told me to cut down on caffeine except in terms of it not being a good use of my limited fluid allowance. Gah. And decaff is bad for our hearts too?! Motherfudgers! And I thought I was being good giving up the booze... :)

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Oh Laura, you made me laugh out loud with your 'Motherfudgers'. I've never heard that one before! x

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Thanks. I guess the jury's still out. I know there's been a number of scientific papers written on the protective effects of caffeine, but perhaps this is only for healthy hearts.

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Coffee divides so many people and the medical profession constantly changes its mind. In small amounts caffeine can actually be good for you - apparently. There is some data to suggest it might help with some conditions and be detrimental to others. The only constant seems to be that too much isn't good - but then nobody really defines 'too much'.

Coffee was the subject of my very first question on this forum. I love and drink coffee - the full caffeinated version - and I'm fine on it. I have never been told by anyone (professional or otherwise) to stop drinking coffee. In moderation its fine.

As an aside, and more for Heartlady ..... coffeeconfidential.org/heal...

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Mr Google is right - you are going to die, but then, so is everyone else. I rather suspect that your time hasn't come quite yet.

The drugs will keep you reasonably stable while you wait for the op and the CRT-D is a well understood and trusted piece of kit. Friends will always try and lift your spirits (its what they do). It can get wearing but unless they have personal experience of what you are going through, they will not really understand what you are going through but they will help you. But don't clam up - talk to them. They will be supportive and you will need them later!

Good luck

Steve

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Hi richard Have you been given any idea of timeframe for when your CRTD is to be fitted?

Have you had a meeting with the ICD clinic yet 're the device?

If not ... you should get an appt with the ICD nurse prior to your op where they talk you through the procedure itself ( that in itself was something I was nervous of) and so this meeting was really helpful and reassuring.

They also talk you through recovery timeframe and give you advice about what you can do ( and what you shouldn't do) in the first couple of weeks. For example not lifting your arm above your shoulder.. .. so the wires have time to settle and don't come out!

Once I started feeling better I would on occasion wear a sling to stop any temptation to lift my arm.

Before my op a big psychological worry was actually having a piece of metal in my body.... I did think this would be a real issue for me to come to terms with. However due to how well I started to feel from day 1 literally... it really allowed me to come to terms very quickly with Kurt. And I suddenly saw the device in a whole new light.... as a real positive addition... or as I call it my second heart.

If you have any questions 're having the device fitted please ask away.. .. we all felt anxious before the op and we are all happy to cover off any questions / fears you may have coming up to the actual op.

Kind regards

Karen

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Hi Richard. I have heart failure and I have a CRT-D device. At work currently, so can't write a full response, but just wanted to say that I echo Karen's positive experience. I have been stable for a good few years and am able to live a full life thanks to my medication and device.

Google is hugely unreliable (and scary!) and you really should avoid googling anything about heart failure. A lot of what you read will not apply to your particular case but will terrify you nonetheless. If you have questions, ask them here or (even better) talk to your cardiologist. I used to think the consultants were keeping things from me because they were so much more positive about everything than Google led me to believe, but I've realised now that they are simply better informed. Heart failure does have a frustrating element of the unknown about it, but such great advancements are being made all the time. Nowadays I really do feel that the best-case scenario is more likely than the worst-case.

As others have said, I'm more than happy to answer any questions you may have. I remember very well how terrifying the early stage post-diagnosis is. It will get easier, I promise.

All the best!

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I found this interesting and useful in my quest for improving health.... hypothyroidmom.com/86-year-...

There is also Dr Houston's paper on nutraceuticals that have similar effects to the numerous drugs etc.

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NOt sure it will help but my mum had heart failure from when she gave birth to me aged 23 to when she died aged 67.

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