Heart block at 42 years old. - British Heart Fou...

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Heart block at 42 years old.

Simone_1974 profile image
37 Replies

I had been ill on and off for about 2 years. Prior to this I was running 25-30 miles per week. At age 40 I thought I was really fit!! Then came the illness. Nothing that could be pinpointed and I ended up having a wave of tests and diagnostic surgery.

Despite me telling my GP that i had chest pain on and off for years and being sent for an ECG nothing could be found. My health continued to deteriorate. I was nauseous most days and lost nearly 5 stone in 6 months. I continued to work full time and try to live day by day as best I could, dealing with different illnesses as they appeared.

I began having palpitations which got progressively worse over 6 months.

I knew there was something ' not right' but didn't really listen to what my body was telling me.

Eventually the Dr offered me anti depressants for 'anxiety' as I now had what seemed like endless palpitations throughout the day. As a qualified nurse I decided not to take these as I was sure that I did not have anxiety! 6 weeks later and at the age of 42 years old I collapsed walking Into the hospital where I work and had a heart rate of 33 per minute.

I was diagnosed with 2nd degree heart block and had a permanent pacemaker fitted after a night in coronary care. This was a total shock. I had suffered from mild chest pain since I could remember but never thought that this could be life threatening.

The shock and trauma of this will probably stay with me for as long as I live. I still have nightmares about collapsing and not waking up. I am totally aware that I'm blessed to have had a pacemaker and that there are people much worse off than me. BUT I would urge anyone who feels unwell to get checked. Even if you have to keep going back to the Drs numerous times. My GP was devastated that despite the ECG she had missed the heart block.......me .....i'm happy and very blessed to be alive, and I'm learning slowly that just because I have a heart condition that I can still have a healthy and fulfilled life .

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Simone_1974
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37 Replies
Heather1957 profile image
Heather1957

I would have thought your rapid weight loss would have tipped them off. So glad that the problem was identified and sorted out - yes. incredibly frightening when you collapse as you did.

Simone_1974 profile image
Simone_1974 in reply toHeather1957

They referred me to a gastroenterologist instead who thought I was coeliac but it turned out that I wasn't. I've put 3 stone back on since my PM was fitted and feeling much better. Thanks for your reply. 😊

From one nurse to another - it's always such a shock to us when we get ill! Really happy to hear you've had your pacemaker implanted so things should be much more settled now.

Take care, Chris

Simone_1974 profile image
Simone_1974 in reply to

Thanks so much. We think we're invincible I guess !!

😀

ccwh70 profile image
ccwh70

Although not the same I can kind of related to your story. 47, active, clean living so never smoked and don't drink. Not overweight, healthy diet etc.. then I started getting increased palpitations, which in itself I wasn't hugely concerned about as I've had the odd episodes for about 15 years since I had an episode of acute anxiety after work stresses and a friend taking their life tipped me over. Therein lay the issue, having anxiety on your medical record makes doctors assume immediately that you're a constantly stressed and anxious person and every ailment you have is likely stress! Anyway my gp referred me to a cardiologist, that took 3 months to happen. I had ecg after ecg, blood test after blood test and even and echocardiogram. This was spread over about 9 months. The end result, I was told my heart was fine, I'm too young and too low risk for heart disease, go away and check back in 6 months. To cut a long story short, 2 months later i was diagnosed as having severe coronary artery disease with 3 serious narrowings in my left major artery, none of which could be stented. 4 weeks ago I underwent a 5.5 hours heart bypass which although successful has left me on a rocky road of recovery... all this even though I was given the all clear and told I was too young! I hope you get well quickly and things settle for you.

Simone_1974 profile image
Simone_1974 in reply toccwh70

Wow!! What a horrible time you must have had! And What a massive relief for you to be through surgery. Thankyou for your reply.

All the best for a speedy recovery and a long and healthy life 😀

DIBBER14 profile image
DIBBER14 in reply toccwh70

I can relate to this. I have always been down as over anxious person by GP. Had several ecg's over the years an echo only to be told that no heart problem. Then referred to cardio physiologist who diagnosed RBBB with left fascicular block. Gobsmacked to say the least and somewhat angry with constantly being told its just anxiety.

Franksluckypants profile image
Franksluckypants

I wonder how many of us have similar stories throughout the country?

I can certainly relate to both Simone’s and CCWH’s experiences, and all the very best of luck to both of you!

I was an active 37yr old playing football 5/6 times a week, but had been feeling ‘something’s not right’ for some considerable time prior, including an A & E visit (2 weeks prior to my MI). I was kept in for a few hours when they ran tests including an arterial O2 test, ECG’s etc. Two weeks later after being off work for a week, I visited the GP in the morning asking when he thought I could go back to playing footy. He reckoned that day if I was feeling ok.

Played at lunchtime and by 5.30pm I was in a cath lab having a blockage removed and 2 stents fitted after a fairly major MI. I had also driven myself in to the hospital, which in retrospect wasn’t that great an idea.

The shock took some time to get over. There was an initial surreal feeling that I’d been wronged and that I didn’t belong in CCU particularly with all the older (& larger) folk round about me. Post event there was also the feeling of euphoria that I survived and was delighted to still be alive, though this changed over the next 6 months, felling like I was stuck in ‘victim’ mode. People constantly asking me how are you doing, was wearing, though with the best intentions I’m sure. Eventually got through that with fitness back up and return to sport though less than the 5-6 times a week than before!

Been fine for 13yrs since, apart from a cardiac arrest in May this year, with subsequent ICD fitted…kind of going through the process again, though in an experienced type way, and not feeling the ‘I’ve been wronged’ state I did before! No more contact sports (footy) will be a blow, but at least I'm still breathing in and oot!

Does any of that make sense? (That would be a first)!

Sorry for the essay - my first post on the website…hopefully won’t be asked to leave?

Simone_1974 profile image
Simone_1974 in reply toFranksluckypants

I love that you say ' victim mode'. I felt the same. On one hand I was so happy to be alive.....and on the other I was fairly angry that my numerous GP visits seemed have failed me. It's nice to get over that and just be thankful that were still here to talk about It!!!

Glad your on the road to recovery. Best wishes for your continued improvement 😀😀

Twobells profile image
Twobells in reply toSimone_1974

Hi Simone, I was diagnosed with anxiety disorder and for several months I just felt unwell. Not rundown, but physically exhausted. I then began to feel very breathless especially when I was walking and this was put down to me having panic attacks caused by so called severe anxiety. I was even told by one GP that I had. a virus, well some virus or anxiety disorder that turned out to be. I had a heart attack followed by an emergency triple bypass. The surgeon could not believe I was still alive. But I am 16 weeks post op now and doing OK, still shocked some days, but grateful I lived to tell the tale.

Simone_1974 profile image
Simone_1974 in reply toTwobells

It's 8 months since my collapse and pacemaker and still some days I feel a bit traumatised by it all. It takes a while for your brain to come to terms with what's happening I think.....even though the physical is fixed. I wake up every day now and think it no longer matters about the daily grind because I'm still here to talk about It and every single day is a blessing. It certainly makes you have a think about life and not to waste a second!!

I'm so pleased for you and your family that your still here. And I sincerely hope you continue to recover well after this awful experience. 😊

David-75 profile image
David-75 in reply toFranksluckypants

Can definitely relate to this.... but I did smoke from 18-30, but still felt cheated as I thought that my regular exercise and football would clean the system out ( yes, I know.. but I was young and stupid); so at 42, having then been living a healthy lifestyle - half marathons, football, HIIT- the thought had never crossed my mind that my onset of tiredness was no more than any other father of a young child and a stressful job was enduring. Wrong of course- one MI and 5 subsequent stents last August proved that. I am still working through the “victim” stage and “cheated” stage (the latter being “Keith Richards Syndrome” I suppose) and also had the euphoric phase and now the settling back to ‘normal’ life again phase I am finding quite difficult. I was advised not to play football, so missing that and competitive sport - but can exercise quite normally (4K in 20 mins the other day- not fast, but happy with that and not out of breath) . My mood was rather pathetically summed up when I bought a piano recently - always wanted to play (to add to my guitar playing) ; but I cried when I set it up - the ‘what’s the point feeling’ ?, but I am battling this and will be starting practice tomorrow. I just thought I would say I can relate - I may have even played football against you at some point as I noted your breathing “oot” comment and I live in Gateshead and work in Newcastle!. Best wishes and good health Richard

I'm 36 and also was diagnosed with heart block and given a pacemaker, 11 weeks ago. I didn't appreciate the seriousness of my situation until afterwards, in all honesty, and that coupled with being made redundant and having to find and start a new job has been a really tough time for me. My brain is definitely still processing all that's happened, and while it doesn't do to dwell on what could have been, it does make you see your life from a new perspective. Lots of luck with everything

Simone_1974 profile image
Simone_1974 in reply to

Wow. 36 years old! That's rough!

Your in the ' early ' stages. It does get easier mentally, it just takes a while. It took me a good 6 months to get my head around it. But give it time. I'm 8 months now since mine and they've had to fiddle a bit with my pacemaker to get the settings just right but I'm feeling better finally. I'm sure you'll get there. Plenty of rest.

Sorry about your redundancy as well. That makes your illness when more rubbish!!! Take the time to recover . Good luck with finding a new job and your continued recovery. 😊

Redcollector profile image
Redcollector in reply to

Hi, have just read your post although you postEd it some while ago.

I am 64 and with no real prior warning albeit 3 bouts of dizziness i was asked to wear a 24 hr ecg machine which picked up heart ‘pauses’ the next day I was told I had heart block and fitted with a PM which has cured the dizziness for sure.

However I have a lingering fear that I must have some underlying reason as to why I had heart block.

I take it from your post no route cause was identified just a ‘electrical’ issue creating the heart block?

Like you I am still trying to process what has happened as it was so out of the blue, PM fitted 8 weeks and counting

I'm already 4 weeks into the new job, it's been a bit of a rollercoaster! The lead that goes into my vein under my collarbone has moved, so when i lie down there's a visible bump under the skin with a loop of wire inside that I can feel if I press on the bump. I had it checked 2 weeks ago, and they said it was normal, but since then it's painful when I sit up or move in bed, I feel that has set me back.

That said, I would much rather be waking up sore and uncomfortable than the alternative. My heart stopped 6 times the day I collapsed, for 20 seconds sometimes, so I'm always going to be thankful that I wake up at all!

Your post was really positive while not making light of the stress you've been through, physically and mentally, and I agree with everything you said. Thanks for wording the feelings so well, I can identify with every word. Good luck with your recovery too

Simone_1974 profile image
Simone_1974 in reply to

I have a bump too. Mine took about 4 months to desensitive around the area.......so I think it is normal. But that doesn't make it any easier does It!!

Remember to keep your shoulder moving because you really don't need a stiff shoulder as well. 😊

Weejenny profile image
Weejenny

Hi Simone, I was 48 with 2nd degree heartblock, I totally understand what you're saying I had my pacemaker fitted in April, after I'd say, a couple of years of back and fore to doctors I was just lucky to have a young doctor who decided to do an ecg one day and first time lucky my heartblock showed up. It was shocking! I'm just getting my head round it now. I would have liked someone to talk to about it after, everyone I've spoken to has the attitude that's it's only a pacemaker! 😕 Well it's not to me as it's changed my life and outlook completely.. I must say I do feel so much better and sleep better too I'm so so grateful. Jen

Simone_1974 profile image
Simone_1974 in reply toWeejenny

Hi Jen.

I really struggled with the ' it's only a pacemaker thing' as it does totally change your outlook on things. My partner has found this increasingly annoying as I now feel that life is too short and while he's still procrastinating I'm off and doing!! I feel that there's not a second to waste! Very much an eye opening experience and extremely grounding!!!

I do hope you continue to improve. Simone. 😊

Redcollector profile image
Redcollector in reply toWeejenny

Hi, I have just had a Pm fitted for heart block 8 weeks ago.

I take it from your post no underlying cause was attributed to the heart block I am concerned that as yet I don’t teally have a handle of exactly what caused my heart block, so I am dealing with the life changing thing I carting in my shoulder and fear it could be more.

It is fun when the GP relies on the result and not the patient.

However, the attitude counts, we have to accept in most countries around the world many heart conditions are only have been picked up in the post mortem. We can waste our lives by feeling bitter or we can enjoy today and tomorrow - love your choice.

Fifs1964 profile image
Fifs1964

I can relate to your shock. I think that has been the hardest thing for me. It blows the idea that there is a profile for people with heart disease out of the water! I suffered excruciating chest pain for 6 months. Nothing showed on the ECG or the treadmill test. A CT showed a blocked artery and I had a stent fitted. Like you, I feel very fortunate to have been treated and have signed up for the Tower of London 10k. I'm looking forward to meeting others who've been through this

Greatfulheart profile image
Greatfulheart

I'm so happy you are better now! It's just a shame that you had to collapse at work for them to figure out what was wrong. Hopefully you are feeling as good as I am since I got my pacemaker on Christmas eve. I feel like you do; Blessed to be alive!

Burnsy1973 profile image
Burnsy1973

Hi. I'm new to the community, but after reading this thread I felt i have to share my current predicament.

I too have stomach issues and am awaiting an appointment with a Gastro Dr for possible coeliac.

However, during the early hours of Saturday morning i was awoken by the most horrible dull, burning pain in my chest. The paramedics gave me GTN with apart from me being sensitive to (HR 44 bpm and blood pressure going through the floor) did not help. ECGs at this time didn't show anything.

While in A and E one of the ECGs showed a change and i was put in the care of the cardio nurse. My blood test were showing negative. In CCU I was monitored but apparently nothing showed up that indicated there was anything wrong eith my heart. Eventually I was told it was most likly to be musculoskeletal and I was sent home with ibuprofen and paracetamol.

All the time on the ward i was in great pain, pain which seemed to move a few times, morphine did not make much difference other than space me out, but during the evening of Saturday the pain went from a 7 to around a 3 within a matter of half an hour or so.

I'm now at home awaiting a phone call from my GP because something doesnt quite feel right. My job involves carrying flat pack furniture up stairs so needless to say, i am worried.

I've researched both musculoskeletal and heart problems and I'm afraid to say that much more of my symptoms align with unstable angina than they do with a pulled muscle. I still have some discomfort in my chest (upper left) into my shoulder/arm and have occasional light headed bouts.

Simone_1974 profile image
Simone_1974 in reply toBurnsy1973

Hi,

Sounds like your having a horrible time. Maybe ask for a 24 hour ECG from your GP. This would show any heart issues. If I'd have had one my heart issue would have shown I'm sure.

My issues with my weight and sickness definitely were part and parcel of my heart condition.......i haven't had any major problems since my pacemaker was inserted!! ........and it turns out I have an intolerance to cows milk......who knew?!?!😁

After my experiences it's important to say that you know your body and how it works because your living with how you feel! Don't be put off going back to your gp as many times as it takes for them to sort your health issues. I felt horribly let down by my GP practice which is a shame really as I work for the NHS.

I hope you get some answers. Keep your chin up. The feeling of getting nowhere can get you down but keep on and you'll get there

👍👍. Good Luck xx

Burnsy1973 profile image
Burnsy1973 in reply toSimone_1974

Thanks Simone. I'm seeing my GP this morning so we'll see how that goes. I'd hoped for a stress ECG too while in hospital but it never occurred.

I also have some kind of food intolerance, 10 years or so but still not diagnosed, but that was never suggested as a cause for the pain.

I'll keep you posted x

Traceyma profile image
Traceyma in reply toBurnsy1973

Hi i also had gastric problems and feeling nauseous before i was diagnosed with heartblock. I would definitely get a 24 hour monitor because mine didn't show up at all on a normal ECG. My nausea has stopped since i had the pacemaker fitted.

Simone_1974 profile image
Simone_1974

Good luck!! Hope it all goes well. Xx

Burnsy1973 profile image
Burnsy1973

So then, guess what my GP said......that's right, nothing.

"The hospital have done comprehensive tests with no findings that it's your heart, so all we can do is wait for your Gastro appointment"

Great. Just a 22 week wait for that then.

Sorry, but i feel frustrated that nobody believes me. Maybe they are right. Only time will tellI guess.

CretanBob profile image
CretanBob in reply toBurnsy1973

Hi Burnsy,

My condition started with gastric problems. The gastrosocopy showed nothing, no ulcers or Barretts thankfully. I was also breathless on bending over to tie my shoes. I had a Manometry which showed the muscles in the oesophagus were not working in tandem. I was unable to eat some things and had reflux. Anyway over two years the symptoms were added to. Pain in the ribs/lungs were investigated by the North West Lung Centre with nothing found. I eventually started with Syncope which further clouded the issue. I was diagnosed with Chronic fatigue 12 month ago and had to stop work. I'm 61, stopped playing 5 a side 2 years ago, never smoked, med diet for years. ECG's and scans on my heart showed nothing. 6 weeks ago had pains in my chest and arms and ignored/put up with it as 'there was nothing wrong with my heart'. Cardiac Arrest (got very lucky), heart attack and two stents later. Two blocked arteries and another one beginning to block. They still do not seem to be interested in why, which is frustrating. The guys experiences on here are helping me no end at the moment. Keep on investigating the Cardio side of things and good luck.

Take care.

Traceyma profile image
Traceyma

Hi I'm new to this but wanted to reply as i have recently been through something similar. Im 53 and started getting mild palpitations and feeling off colour in general. Think gp thought it was anxiety but the practice nurse arranged for a 24 hour monitor. Very shocked when the consultant rang me at work to say i could collapse any time and needed a pacemaker fitted immediately. Procedure is done and i feel better but still cant get my head round the fact i was actually very ill.

tmatthews profile image
tmatthews

Bless you... You are amazing.. You have done really well and should be proud of yourself. Xxx

Redcollector profile image
Redcollector

Hi, I had a much better experience from the doctors but had no symptoms other than 3 bouts of dizziness, after identifying heart

‘pauses’ was sent straight to hospital and had PM fitted snd can relate to the ‘life changing’ comments through your thread.

I have replied to others on this thread so apologies if you have seen this already.

Although you describe symptoms prior to being diagnosed with heart block I assume those all disappeared after PM fitted? And no underlying cause for the heart block was identified, I am still struggling with the Why-has this happened and what caused it at this stage so move forward.

My worry is something more sinister may be behind the heart block.

Interestingly my consultant wants my to have a heart mri to rule out structural infiltration and has said that this is mainly due to my age 64 being young to have heart block.

Clearly your thread has shown there are those a lot younger than me with heart block for no apparent reason

sandybrown profile image
sandybrown in reply toRedcollector

Heart problems can happen to any one at any age, I do not agree with your consultant. There is electro cardio gram, echo cardio gram and MRI, there tests an give good indication providing the person looking at it have experience. Please do give us the result of your MRI.

Redcollector profile image
Redcollector in reply tosandybrown

Hi, thanks for your prompt reply, I will certainly let you know the result although don't as yet have a date for it.

I had my first pacing check last week and was told that my PM was doing 1% work and my heart 99% some guess threat much mean a lot of the electrical signals are getting through.

Do you know how your PM is performing?

I assume you had no underplaying cause, just heart block in isolation?

Thanks again Al

sandybrown profile image
sandybrown in reply toRedcollector

Thanks, have sent you a message.

Bigbrian profile image
Bigbrian

Hi there

Most non-heart attacks present to GPS as a chest infection when there is an underlying heart problem and you need to get through those tests/ meds to really rule it out.

So if can take a while, I was seeing the nurse practitioner for about 6-8 months before I went to A+E and got an ECG that confirmed heart problems, I wonder if I had seen a doctor if it would have been noticed earlier but that’s the way it was, feel very lucky not to have had a HA or arrest before diagnosis, now just waiting quietly in line for an CRT-D to help my heart beat better.

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