Terrified 😢 Just looking for shared ... - British Heart Fou...

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Terrified 😢 Just looking for shared experiences.

Steambunny profile image
70 Replies

Hi. This is a bit of an essay so thank you if you take the time to read it.

I’m 55 and grew up with my dad’s heart disease impacting on our family life. He had his first heart attack at 35 when I was 5. He went on to have further MI’s, bypass surgery and died at 53.

Because of this I’ve always looked after my health, never smoked, eat broadly well (though I do like wine and chocolate) I’m a runner. (I ran a marathon in September - ironically a charity place for BHF)

I had breast cancer 5 years ago (caught early) but other than that have never been ill.

In the past 4 months my worst fears seem to be coming true. My total cholesterol has gone up to 6.9 (it used to be around 5) and with my family history my GP prescribed statins.

Then I felt unwell whilst running - suddenly really sweaty, dizzy, sick and I’ve been getting discomfort in my left arm/ shoulder.

I had to insist that the GP did an ECG (she was dismissive as I had no chest pain)

The ECG was abnormal (p waves in the anterior chest leads and repolarisation changes in the inferior leads). I was referred to a cardiologist who heard a systolic murmur on the left sternal edge. I admit I was so anxious at the appointment that I didn’t take in what this all means.

He suggested an echocardiogram and I have this on Friday.

I am utterly terrified. My partner thinks my anxiety is causing the symptoms but I can’t shake a horrible gut feeling that there’s something really wrong.

Thanks for reading and I’d appreciate any words of wisdom.

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Steambunny
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70 Replies

Hello :-)

I am so sorry to hear about you losing your Dad so young and that there seems to be heart conditions that are hereditary in your family and you have lived in fear that it might have been passed on to you and now and may I say well done you insisting the Doctor did an ECG that can take some courage but you did and something was picked up that needs looking at furthur so I wonder what the Doctors reaction was then you were right as we sometimes know our bodies better than they do !

Heart attacks and Bypasses run in my family as well as valve

My Uncle died young due to his valve which needed replacing yet he was to afraid to have it done my Dad had a quadruple Bypass in his 40's and lived to be 77 and then it was not his heart that took him but something else

I am now 60 and had a triple Bypass coming up 17 months ago after 3 heart attacks and it was always my fear or one of them that I would take after my Dad but then somehow when you are faced with it you deal with it even though it is not easy I am still struggling

I suffer with anxiety anyway so this has made my anxiety worse and yes anxiety does not help but can be hard to keep it under control but you went through cancer and I am so happy you beat it and that must have been a fearful time for you but you were strong and got through it and you will do the same with whatever this turns out to be which till they have done tests you are not sure it could be nothing serious at all but the waiting is always the worst

I know your Dad died young when you were only 5 and even though my Maths is not great that would have been about 50 years ago with your age you are now but you have to remember that things have moved on and medication is better , Consultants and Surgeons are so much experienced they are brilliant in fact and even though there maybe something happening and at the moment it is a maybe unlike your Dad the outcome now we are so much more advanced does not mean history is going to repeat itself and you have to try and focus on that and trust you are in safe hands :-)

You will get your echocardiogram Friday and yes you will feel anxious but that is normal

Keep coming and talking with us we have all been there so know how it feels with the worry and you are not alone we will try and do everything we can to help support you and even if we don't have the answers we are very good at listening :-)

Let us know how you get on Friday you will get through this :-) x

Steambunny profile image
Steambunny in reply to

Thankyou so much. I’m having a few tears that you understand. My dad didn’t die until he was 53 (I was 24 by then) but it’s still young.

I will certainly let you know how Friday goes. The anxiety is horrible isn’t it. My BP when I take it at home is fine but it was through the roof at the appointment.

I’m glad you are doing ok and I know you are right about asking for the tests even if it’s tempting to put your head in the sand. I’m reading a book called A woman’s heart by Dr Angela Maas which is about how women’s symptoms and test results are different and we often get dismissed as overly anxious 😬

Milkfairy profile image
MilkfairyHeart Star in reply to Steambunny

Hidden has given you a brilliant response. She is the forum's 'national treasure'

Prof Angela Maas's book is very good.

I live with a type of non obstructive coronary artery disease, vasospastic angina which Prof Maas discusses in her book. It wasn't easy to diagnose and the ' it's all anxiety and in your head card' was played on me at first.

I knew something was wrong and persisted, found a specialist and had the correct testing.

The positive side of your story is that you have been referred to a Cardiologist who has arranged the appropriate tests for you.

Hopefully your echocardiogram will help towards your Cardiologist understanding what's causing your symptoms.

Is it possible to take someone with you to your consultation with your Cardiologist?

Sometimes 2 pairs of ears are better than one.

Maybe write down your questions you want to ask.

Good luck on Friday.

Steambunny profile image
Steambunny in reply to Milkfairy

Thank you. My partner will come with me for the echo. And yes writing questions is a good idea - thanks. I hope you are doing ok xxx

Mlinde profile image
Mlinde in reply to Milkfairy

Yes, it's possible to have both an actual issue with the heart excerbated by anxiety! Why is it always either or? Don't doctors know just how powerful the brain's control of the body is, even now? I'm constantly amazed at just how ignorant doctors really are, even after years of study and experience should have taught them that the brain and body are one, single organism, not two, separate entities.Just look at how the brain controls blood pressure, directly without there being any physical cause.

Milkfairy profile image
MilkfairyHeart Star in reply to Mlinde

Absolutely, the mind and body are interelated.

I used breathing and relaxation techniques when I was in labour. It still hurt however managing my fear and anxiety helped me to manage the physical stress of the labour better.

I still use these techniques when I am having an episode of coronary vasospasms.

My Cardiologist knows this and admitted me from clinic when he saw me sitting quietly totally concentrated on managing my chest pain.

in reply to Steambunny

Hello :-)

Told you my Maths was rubbish :-D

But I do understand but I also know it will be ok even though I know at the moment every thought will be going through your mind and it will be hard to believe it

My BP is the same goes up as soon as they take it but the Doctors all know it , will be high if ever they take it but normal when I do that I think is down to when we are anxious it does not worry them now as they know and sometimes they take it 3 times talking to me inbetween and it always goes down when they distract me :-)

It is very true about women getting more dismissed over heart issues but I think they are becoming more aware and our symptoms can show up different to men and that is why if we feel something is not right we all need to do what you have insist as now you will get any treatment you need if it is needed

You can do this honestly and you will and look forward to hearing how you get on Friday :-) x

Mlinde profile image
Mlinde in reply to

Yes, it's called the White Coat Syndrome, samo me, as soon as I see the white coat, my BP goes up.

in reply to Mlinde

:-) x

Mlinde profile image
Mlinde in reply to

You'll be just fine, trust your instincts and have a Happee!

in reply to Mlinde

Thank You :-) x

fairgo45 profile image
fairgo45 in reply to

you really are someone who lives up to their name Be Kind always there with a comforting post

in reply to fairgo45

Hello :-)

Thank You :-)

I hope you are keeping well :-) x

fairgo45 profile image
fairgo45 in reply to

Happy New Year to you

Janet

in reply to fairgo45

Hello :-)

Thank You and to you to :-) x

E16Pat profile image
E16Pat in reply to

BeKind28

Lots of people are very glad you take the time to answer problems me included with such knowledge,

I thank you very much for being kind

Pat

in reply to E16Pat

Hello Pat :-)

I have not noticed you around for a while how are you doing now ?

Did you have a nice Christmas and a Happy New Year to you to :-)

I am waiting for the Spring I suppose you are to so you can get out and about more to :-)

Thank you for your kind words they are very much appreciated :-) x

E16Pat profile image
E16Pat in reply to

thank you for asking, I’m making slow progress I’m able to walk some distant but not as far yet as we would walk but I’ll bet there, like you have said it is very difficult not to do to much, but my biggest problem is I get terrible anxiety when I wake in the morning and as the days goes by I feel better, I have contacted talking therapies and I will get a phone call from them next Friday, hopefully they will able to help me, I have read that this is not unusual after these sort of operations, and like lots of us I’m counting down when it will start to get a bit warmer,

I wish you a happy and healthy new year as you can possible have

Take care

Pat

in reply to E16Pat

Hello Pat :-)

I think you are doing great I really do better than me 17 months on !

As soon as that warmer weather comes I think there will be no stopping you and also I think this anxiety you are feeling will improve to

I suffer with anxiety and I wake up every morning with it and it goes on all day , all night I can even wake up in the night with it so tell yourself ok I wake with anxiety but it gets better through the day

Talking therapy is really good and I hope it will help you

Please remember how far you have come you should be so proud of yourself :-) x

Steambunny profile image
Steambunny in reply to E16Pat

Hi Pat.

I hope you get a positive response from Talking Therapies

E16Pat profile image
E16Pat in reply to Steambunny

thank you

👍🏻👍🏻👍🏻

Your feelings are natural. Remember you are now being looked after and you are on their radar. They are the experts try to put your faith in them. It will be a bit of a bumpy ride but. Personally I will never be the same person but what I have found out today, from my cardiac nurse. Who I rate highly. The congenital heart disease was with me from birth. And with all the tests I have had it is in a stable condition. So the the medication I am on will help to keep it stable. Naturally you as an individual can do your part with diet and exercise. You have said you already are quite active so that's a plus and you have not smoked another plus. And you seem to eat OK. Regarding alcohol take it in small amounts the less the better but life still goes on. It is horrible but they will get to bottom of it and then a plan can be made. We are lucky that this side to medical profession has moved on in leaps and bounds

Steambunny profile image
Steambunny in reply to

Thank you. I must remember to be guided by the consultant and not Dr Google!

in reply to Steambunny

Yes try not to Google or you tube. But I am naughty I am always trying to fix myself being an engineer. Fault finding and stuff like that. But one thing I have learnt is make a good connection with the specialist and cardiac nurses. I have been lucky that iam under the adult congenital heart team at norwich. And I can phone them when worried and they have been brilliant. My specialist was even at my mri. Possibly orchestrating what she wanted to see and then met me coming out of the mri machine. It had been a journey and will continue to be journey. But I carnt knock the nhs, might a bit cumbersome from the waiting side and getting reports. But I had all the tests she wanted in the space of 6 months. A

EndyII profile image
EndyII

Hello Steambunny,

Sorry to hear of the loss of your father at 20, and the way you feel right now, but it will get better, you will learn to move past it and do what you can to live a full life. You are a survivor of breast cancer, you will get through this also.

Your family background is very similar to mine and impacted me similarly. I am 54, my father died of heart failure at 55 when I was 20, after 3 heart attacks in his 40s, grandfather died of massive HA at 47. I have never smoked, eat health/healthish - balanced veg/med diet, active including competing in sports at very high level till 28, and active after - bike to work, etc. I have always feared fretted about my family history that drove me to live a better life style, but it just crashed and snowballed into a ton of anxiety when I started having issues, and then found out that I have heart disease. I thought I would be lucky, and skip the family genetics. It took months to get past thinking, I will follow soon in my fathers footsteps. The rational side, just gets overwhelmed. But getting through the echocardiogram test and additional followups; talking to and finding support from your family, cardiologist, and people on this forum; figuring out your limits and taking actions to improve areas you can change, will help you get past this difficult time.

Hang in there it will get better.

Kind regards

Steambunny profile image
Steambunny in reply to EndyII

Thank you - yes we do sound very similar. It’s scary though as I used to think really fit people couldn’t suddenly die of heart disease - then it happened to someone from my running club. But I know I’ve done the right thing in getting tested.

How are you now? What’s your situation? (If it’s ok to ask?)

EndyII profile image
EndyII in reply to Steambunny

I am much better mentally and physically then 6 months ago, but every once and awhile bad thoughts come back, but less and less. I have accepted where I am, and have mostly moved on to live the rest of my life as best as possible.

My disease turned out to be moderate, I am on the cusp of requiring stents, but on handful of meds to push that off as much as possible. Its always scarier till you know more through tests and time, to help break that vicious cycle. I have been slowly building up conditioning again. I had a conflux of a couple medical issues including long covid andhigh stress event (my wife had traumatic brain injury); then lockdown , and scared to do any strenuous activity caused a lot of muscle atrophy. As you probably know its really tough at 50+ to build that back up again. But I work out 4-5 days a week, walk/bike as much as possibly - we have no car, lost 18 kilos (not all good way stress event/covid etc), and eat even better but still have a treat once and awhile.

Again, you will get through this, it will take time.

LadyZ13 profile image
LadyZ13

My (holey) heart really goes out to you. I can totally relate to the heart anxiety and can't begin to imagine how heavily it must weigh with a family history. But. Everything our lovely friend BeKind has said, plus the thoughts of others, is absolutely true.

The fact that you're on the radar and haven't been dismissed as a worry-wart-woman is a huge step to get you answers. I know you will keep advocating for yourself and with your family history they will, I hope, take your concerns seriously and keep investigating to get you answers. It's absolutely incredible what they can do now, even relatively non-invasively, my mind is blown by how much they can see and infer from the tests.

Yes, pains or discomfort can be anxiety in entirely but even with that knowledge I asked my consultant about it last week. "I have a continued - not pain, but - tightness, awareness, twinges in my chest - is it just stress??" And he said they'd looked at my heart is just about every way they can (sooo many ECGs, an MRI, a CT, two Echos...) and, apart from the socking great hole in my atrial septum, it's alllll fine and there's nothing that gives them any concerns (they'll patch me up sometime in the next couple of years, like that's no Biggie).

My final bit of advice would be to take someone in with you who is good with attention to detail, AND ask at the start of any consultation if the doctor would mind you taking the conversation as a voice note. That way you can revisit anything they say if it didn't make sense the first time around. Google Voice Record even manages a pretty actual written transcription of what's said, which I have found enormously helpful.

Hope that helps. I really feel for you. Deep breaths, keep talking to everyone on the forum, we're here for you. X

Steambunny profile image
Steambunny in reply to LadyZ13

Thank you SO much. This is already helping me feel less alone with it. My partner is wonderful but keeps saying “I’m sure it’ll be fine” (which I know means he’s hoping it will be) but I feel sick with the fear and it’s helpful to know people here have felt the same. Thank you.

And I like the idea of a voice recording (although it’s likely to have me crying on it 🤦🏽‍♀️)

I hope you are doing ok 👍🏼

LadyZ13 profile image
LadyZ13 in reply to Steambunny

You're not alone, truly. I know we're randoms on a forum but we're been there (or are there, right now!). It's OK to feel afraid. Take a list of all of your questions (and people on here have been so, so helpful in helping figure out what to ask!) and make sure you're clear what the follow up will be and the timeframes.

Recording tip- Push the phone towards the doctor - my husband did the recording from the chaperone chair away from me and the consultant, and sound quality, though enough to go on, could have been better. You can't hear me at all (just as well, but sometimes it's a puzzle to work out what question he was answering).

Keep us updated, keep talking x

fairgo45 profile image
fairgo45 in reply to LadyZ13

I always do that message recording as well, i put it on and then place it screen down on the table near my cardiologist helps a lot when your mind goes blank after a consultation

DarrenNorwich profile image
DarrenNorwich

Hi - completely understand why you are feeling terrified. It's early days, it's raw and you don't have enough information.

The echocardiogram is the start of getting some facts that you can then process and start looking at options (if needed). I used to run (5 and 10k, not those insane marathons!) and about 5 years found out I have a hereditary heart condition, lost my mum to it - currently have an ICD and have been given the opportunity to be placed on the transplant list.

I'm not looking to play on my journey, we've all got our stories - more trying to convey that there are plenty options out there, procedures, operations, medications and rehab for example if it comes to that. In addition, there are online groups (for example - I've joined an advanced heart failure leading to transplant group via Cardiomyopathy UK, and those video calls have been a huge help), and you have the incredible NHS on your side (some amazing people will be doing everything they can for you if you need them).

If you are asking for advice - I'd recommend to keep talking to people about your concerns/anxiety as much as possible, it's natural to experience that - you are certainly not alone in that either, and I found comfort knowing I wasn't unusual in having those experiences, It's crap what you are going through, I hope Friday provides you with some answers.

Steambunny profile image
Steambunny in reply to DarrenNorwich

Thank you. I really appreciate your positive and practical approach. Sounds like you’ve got a tough time yourself so thank you for taking the time to offer support. So many different stories here.

Larneybuds profile image
Larneybuds

Good morning. It must be a worry for you purely because of what happened with your dad during your childhood and that would have a lasting impression with you. This all happened a few years ago and things have changed so much with what they can do now with heart problems and difficulties. The technology and knowledge now regarding heart disease etc is very advanced and people are living with and surviving things that even 20 years ago they wouldn't have got through. You only have to read things on the forum to realise how many people now are still here to tell their tales after surgery, or procedures and medications.....myself included. It really is amazing now what they can do. The one thing that I would tell anyone is be insistent and if you aren't happy about your situation or answers you are getting....keep on about it. Again there's plenty of advice on here as to who to contact , so please ask if you get stuck or aren't sure about anything.

Try not to fill your head with things that might be wrong. Anxiety can cause all sorts and quite often it is so different to what you imagined. Let us know how you get on. Good luck and take care x

Steambunny profile image
Steambunny in reply to Larneybuds

Thank you. I am really trying to stay positive and not sink into the “it’s not fair” narrative. I can see folk here are dealing with similar worries and far worse! I can be a tough bird when I need to!

Larneybuds profile image
Larneybuds in reply to Steambunny

Lol.....tough bird is good👍👍

Heartfairy profile image
Heartfairy

Hello Steambunny - gosh please can I say how brave you are first of all to have come through your treatment of breast cancer! You are truly amazing already. As for the heart - you really aren’t alone with your thoughts and fears. You have had some great advice and comments already and I can only echo (no pun intended) those. I must tell you one thing my cardiologist said to me though and I have repeated this on the forum (so apologies to those who are hearing this yet again) but he said “if you’re going to get something going wrong in your body you want it to be your heart (not that we want anything of course!) as the research, medication and options are the best. They can patch it up, fix it and send us back out” basically it’s not like back in the day when you sadly lost your dad. Like you I thought I lived a “healthy” life - don’t smoke, within healthy BMI range, don’t drink often etc but BANG heart attack 9 weeks ago following chest pains whilst walking. Had a scare back in March so had already had many tests that perhaps you will have too, things like ECG, Echo, Perfusion Scan, Angiogram - im the biggest wimp on the planet and was very scared but the tests were really nothing to worry about, honestly, the medics were wonderful and put me at ease and they will look after you too. Again like you heart disease runs in the family (lost my mum, aunties and an uncle to it) so yes it does hang over us but please remember we are on the radar, medication helps and listen to your body like you have done already you very wise lady. You will get sorted now, sounds like you have a good husband to support you and just take one day at a time. When you get stressed my cardiac nurse told me to “belly breathe” and lie flat on the floor or bed like a star fish - it does relax you! I’ve used it many times. Keep us up to date with your results and good luck with it all. Sending you good luck hugs ❤️🧚🏼‍♀️

Steambunny profile image
Steambunny in reply to Heartfairy

Thank you. It was weird when I got the breast cancer diagnosis as all my life I’ve expected the heart disease but never worried about cancer 🤷🏽‍♀️ So I think I dealt with it better?

I really like what your consultant said. That’s reassuring!

To be honest I’m not actually scared of the tests - just the results! And running is such a huge part of my life - I don’t want to have to change that. When I had the biopsy which confirmed the cancer diagnosis my first question was “when can I run?” 😂

I’ve been using the Headspace app as I found that helpful before.

Heartfairy profile image
Heartfairy in reply to Steambunny

Hi again. Well once again well done on coming through the cancer situation as none of us want that either. It does sound like your running and exercise helps you and being already fit will once again help you with whatever the outcome is with your heart. Just cross that bridge when you come to it, you will get back to whatever you did before - you only have to read how Mr Thatwasunexpected gets on with his exercise regime - he really is inspiring! Just do what the docs say and take meds but hey who knows it may all be not as bad as you expect. I know it’s scary, especially the unknown but remember what my cardiologist said. So I wish you well with the outcome and let us know. You are stronger than you think and will deal with whatever should you need to. Keep us posted. Big hugs ❤️🧚🏼‍♀️

Coper10 profile image
Coper10

Hello, I can empathise with your concerns and am so glad you insisted on further follow up with your GP. My dad died aged 54 when I was only 10 having had CHD and a couple of heart attacks, so I have been mindful of my heart health. However, I was blindsided 2 years ago (age 52) to discover I had an aortic aneurysm 58mm and needed urgent open heart surgery. This was picked up by an echocardiogram. Ironically, it was totally unrelated to my dad’s medical history as subsequently following genetic testing I was found to have Marfan syndrome (from my mum’s side of the family). I have 2 children who were the same age as my sister and I were when my dad died, so my mind was working overtime thinking history would repeat itself. 2 years on, I have recovered well and am very thankful for the care I received. It is good that you have the echo booked. If this shows something, then at least you will know so it can be sorted. What I have learnt is to be proactive - I always note down any questions I have before any appointments, make notes of the responses, and chase appointments/tests up if I haven’t heard anything in the specified time. In my experience, all the consultant secretaries have been hugely helpful and supportive. I wish you all the very best!

Steambunny profile image
Steambunny in reply to Coper10

Thankyou. And blimey - no wonder you were blindsided! You sound amazing to have got through that.

22alfie profile image
22alfie

There is light at the end. I've also been very active all my life. Runner, cyclist hiker, kayak and last year I took heart attack out the blue 💙 got stent fitted.y confidence was zoro and anxiety high. Then my hubby got me a border collie pup!! Of all dogs to get lol but he has been a get recovery dog and so sweet and great with the grandkids. I've been out a wee cycle on a wee wee hill and walk at least 3/4 miles everyday now. And now looking forward to get out on kayak later in the year. With my dog who had his life jacket at the ready. I'm 66 but as I said always been active so think this has helped me to. Keep your chin up. X

Steambunny profile image
Steambunny in reply to 22alfie

Than you. You certainly sound like you are making the most of doing what you can 😊Our dog is 14 so less of a handful 😂

pjw17 profile image
pjw17

Hello Steambunny ,You've already proved you can overcome your health problems once ,you CAN do it again .

Like a lot on here I was very fit and a competitive cyclist before HA and stent in may 20 , indeed my HA occurred whilst working out at home .

Your previous running fitness will help you get through this and you'll be in a better place re. your heart condition after echo.

It's normal to worry but with guidance from the experts and people on here you'll get there .

Keep us posted .

Good luck.

Steambunny profile image
Steambunny in reply to pjw17

Thank you. I’m realising how many fit and active people this has happened to 😢

VickyHK72 profile image
VickyHK72

dear steambunny, I had to reply as your story sounds so much like my own! I lost my dad when I was 21 (he was 57) again after MI’s which started in his 30’s and a triple bypass when he was around 40. 2 years ago I suddenly found out I had high cholesterol (6.5) and high blood pressure. I’m 50. This absolutely knocked me for six as I felt like I was on a road I couldn’t get off (I also had a CT angiogram which revealed some mild atheroma in the LAD) and I was doomed to follow my dads path. This affected me severely mentally and I had 3 months off work - I had counselling (including grief counselling which really helped me deal with the loss of my dad) and started on antidepressants (something I was really against for some reason)

Now, I am still quite anxious at times about my heart health and I have visited a&e several times in the last 24 months but on the whole I am well and feel I’m coping mentally. My advice would be to go for the echo and ask all the questions you have, write down the info the cardiologist gives you. Don’t be afraid to ask loads of questions. Explain your family history so they understand that fully. I’m

Sure the cardiologist will be able to give you information about the ecg findings and anything the echo shows. I would maybe ask for a ct angiogram as well to cover all bases. I would say don’t ever let a medical professional dismiss your fears, they are valid and your past experience has shaped those. I completely sympathise and understand, I too felt there was something really wrong and that no one understood or was taking me seriously. Now I know what’s wrong I can do everything I can to slow down my heart disease (taking statins, running, healthy diet etc all things you are also doing) if I’m honest, the antidepressants also really helped me as I’d got into a terrible spiral of investigating my condition on good old google and drawing my own terrible conclusions, not helpful!

Maybe also ask your gp about counselling, they can refer you or give you a contact so you can self refer. I found the strategies to deal with my overwhelming anxiety were really helpful.

My grief counsellor told me that it’s important to try not to live as a ‘patient’ but to see that I’m in control. She also told me I’m ‘living with heart disease’ not that I suffer from it, that helped me to reframe it in my mind. I wish you all the best and hope the cardiologist is reassuring and helpful.

Steambunny profile image
Steambunny in reply to VickyHK72

Thankyou - that’s really helpful and although I’m sorry you are going through it, it’s helped me feel less on my own. I don’t think people really get what it’s like to have lived in the shadow of something for so long. As a teenager I remember being told by my mum “don’t upset your dad you’ll cause him to have another heart attack” so we never did healthy disagreements or arguing in our family and to this day conflict terrifies me 😢

I like that reframe of “living with” not “suffering from”. I’ve been trying to cut down on my wine consumption as I know it can raise cholesterol and make the side effects of statins worse - and I’ve been trying to reframe that as self care, not self denial!

I hope you remain well xxxx

VickyHK72 profile image
VickyHK72 in reply to Steambunny

gosh, that sounds tough being told you could give your dad a HA by simply having a healthy argument, no wonder this is a very difficult time for you.

I have reduced my wine consumption but still allow myself several glasses on an evening out! Life has to have some pleasures! I definitely agree with you that it helps to know other people are going through similar things - when I was first diagnosed I remember feeling furious that no one else had this terrible thing to deal with, but then talking to friends and reading posts on here made me realise that everyone has something to deal with despite how things might look on the outside. That did help me to know it wasn’t just me going through a tough time.

You are definitely not alone. I hope the cardiologist is able to reassure you xxx

Steambunny profile image
Steambunny in reply to VickyHK72

Thankyou. Have you been ok on the statin? I’ve only been taking it for the past 2 weeks and I understand that any muscle pain doesn’t start immediately???

VickyHK72 profile image
VickyHK72 in reply to Steambunny

I’ve been absolutely fine - the cardiologist told me not to read too much about statins as a lot of the press they get is negative and I know some people cannot tolerate them but I’ve not had any issues at all, and I have taken up running since starting statins and now run 6k three times a week. I’m on atorvastatin. There are several different statins so if the first one doesn’t agree with you there are other to try as alternatives.

Steambunny profile image
Steambunny in reply to VickyHK72

Yes that’s what I’m taking.

Look try not to worry. The echocardiogram will show a lot and if required you will be refered for a heart MRI scan. Heart disease just creeps up on you and it was good your GP did an ecg. I think you may have to hang up your running shoes though and opt for a more sedate lifestyle. I'm 62 and was diagnosed with severe HF in 2019. Life is now very different.

Steambunny profile image
Steambunny in reply to

Thank you. I hope you are doing ok? I have to say though that I’m not going to hang up my running shoes unless I absolutely have to - only if the cardiologist drags them off me screaming! 😉

VickyHK72 profile image
VickyHK72 in reply to Steambunny

definitely keep running (unless as you say, the cardiologist strongly advises against it) my lipid clinic dr told me it was great that I’d started walking daily and I asked if I should push myself physically and he said ‘absolutely!’

Legend2 profile image
Legend2

oh my goodness how we all need each other at these times

Other people’s reactions are so supportive there’s not much more I can say other than be strong and push for everything and that you have done admirably

Good luck Friday

Steambunny profile image
Steambunny in reply to Legend2

Thankyou

FrankFrank profile image
FrankFrank

Re concerns re heart issues it may be worth asking cardiology dept if they have a EMDR therapist in the team/ hospital.Ongoing concerns re heart especially in a situation such as yours are not uncommon.I have had open heart surgery to replace a mitral valve.It was 7 years ago and I felt every symptom post surgery was a possible indication of something else being wrong .I often went to A& E to get check over and they were very thorough and professional but never need further intervention.EMDR helped me manage my real concerns but feel more able to function and not be crippled by the anxiety.

Steambunny profile image
Steambunny in reply to FrankFrank

Thankyou and I’ll hold that in mind. I’ve been using the headspace app which is helping. I’m glad you’re managing better. Xx

devonian186 profile image
devonian186

Take a small notebook and pen. Write on it in advance any directly relevant facts. Tell them about your anxiety. As the session progresses write down any thing else you want answers to as they are easily forgotten in what can often be a rushed experience, made worse by anxiety.

One of the most important questions is "what happens next". Make sure your condition is explained to you in language you understand and what medication you need and what if any surgery might be needed.

Steambunny profile image
Steambunny in reply to devonian186

Thank you

heart_surgery profile image
heart_surgery

Hello Steambunny,

I second the advice about writing down your questions and concerns especially details about what type of heart problems you are having, if they may be hereditary, what treatments are available what surgeries are recommended what drugs are prescribed why they are prescribed and what side effects they may have.... everything you want to know.... write it down and ask intelligent questions.

I had GP's telling me that I was imagining the pain in my chest and that you don't get pain from the Aorta because there are no nerves there, I was repeatedly told that by GP's who are given narrow symptom guidelines for heart problems. On a number of occassions Gp's I consulted simply didn't believe me when I talked about my symptoms and flatly denied that the chest pain I waas experienceing was due to my aneurysm even though I pointed to the exact place in my chest and asked if that was where my aorta was and pointed to the documents in my notes recording 15 years of MRI scans for a known AAA. That can be frustrating... Gp's are not always useful.

I was told many years ago that surgery was inevitable for me, that in itself was difficult to deal with... One cardiologist in training once made a cutting gesture with his hand and said "we are going to cut you right up here and take out your heart"! Over the years contemplating the surgery I had to deal with serious continued anxiety. The medicaiton I was on was not changed or reassessed for 22 years (guidelines insist that medication be re-assessed every 3 years I think). In the end the medication I was taking was withdrawn and put on the yellow list. I am sure the medication I was put on years ago contributed to my condition after I learned about it (ascending thoracic aneursim, I had my aorta cut out and replaced with a plastic tube) I asked to be referred to a different consultant twice and finally found a surgeon who eventually did the surgery.. However what happened in surgery was radically different to what had been planned.

Don't be afraid to ask for a different consultant if you are not happy , never be afraid to ask questions... always be ready with written questions after all you have plenty of time to prepare so be prepared. Always remember to address professionals politely and with ceourtesy, never get angry. When the time comes you will have done your best and that is all everyone can do including the cardiologists, consultants, surgeons, nurses and aneasthetists can do. Although sometimes Gp's are more interested in an early lunch!

All the best Tim

Steambunny profile image
Steambunny in reply to heart_surgery

Blimey Tim, what a horrible experience. You are testament to sticking with it and being assertive. Well done - your experience and advice is really helpful. Thankyou

Well done for challenging the GP! Hope your Friday appointment goes well; you're in the system now and despite current pressures, the NHS does deliver. I've recently learned from Heart Specialist Nurse (for my mother) that the echocardiogram (scan) can tell what type of heart failure is present - and that helps specify correct medication. She had CABG in her 60's, Stents in her 80's and now aged 96 continues on medication. There is every chance of a good life post-diagnosis!

Steambunny profile image
Steambunny in reply to

Thankyou

spinningjenny profile image
spinningjenny

Hi, I think you are doing exactly the right thing. You have been aware all your life that you could potentially have problems, have been on guard in case any symptoms appear and as soon as they have done you have sought help. Nobody could have done more.

Now you are under the care of a Cardiologist you may find you are subject to a whole battery of tests. Just go with the flow and try not to worry about any of them, they are all there to give those nice medical folk a clearer idea of what is going on.

You can consider yourself to have overcome the first hurdle, which is getting a GP to take you seriously. Continue to battle on and don’t be afraid to ask questions, far better to ask the doctors when you see them than to ask all us unqualified folk on the forum. We try to be helpful but there are limits!

Try not to panic, we all know that’s easier said than done, and remember there is always emotional support here whenever you feel you need a rant or a weep xx

Steambunny profile image
Steambunny in reply to spinningjenny

Thankyou. I’m probably going to need it xxx

Dessert profile image
Dessert

It’s good to be aware . Women don’t always get chest pain when they have a heart attack . Women can have pain in their back, stomach , legs and they’re having a heart attack. I had severe abdominal pain, NO CHEST PAIN . I also had major sweats and felt very weak. That was a major heart attack that I had - I had a Widowmaker . , I had chest pain when I had my second heart attack .

My ECG was clear . You can tell if you’ve had a heart attack if you have a special blood test which measures your Troponin levels Eg When I had my Troponin test when I had my second heart attack it was meant to be 40 and it was 350

I hope your test went well or will go well if you haven’t had it yet Xx

Steambunny profile image
Steambunny in reply to Dessert

That’s really scary. I hope you are ok now? I had my echo this afternoon. Nothing structurally wrong but obviously it doesn’t look at the arteries. I’ve got the follow up next week with the cardiologist and will ask about having a CT angiogram. The radiographer said that it’s possible to have a structurally normal heart but blocked arteries and suggested this is likely to be the next test?

Hello. If you dont mind me asking, what was the time frame from starting the statins to then falling ill with pains?

Was it really needed to start to statins? Iv heard real bad things about those. I have heart failure myself and my cholesterol i was told was little high since i have a heart problem, but it would ordinarily be fine for someone who doesnt have heart problems. So i decided to lower it naturally through diet and exercise. Not sure how its going but making steps to change it. Im already on a ton of drugs so really dont want to add to the mix. Im already a favourite customer to big pharma.

Steambunny profile image
Steambunny in reply to

Hi.

My GP suggested statins when my cholesterol came back high in the summer. Initially I said I’d try to bring it down with better diet (although it was already pretty good). It was October when I started to feel more unwell, had arm discomfort and the abnormal ECG etc - and when I saw the cardiologist in December he suggested starting them. So I’ve only been taking them about 3 weeks so far.

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