Hi everyone, I posted once before and got so much back from all the replies. Can anyone offer any comments on what I am experiencing these days.
After my massive HA, beginning of August my heart is EF 37 was 35, I am on a cocktail of drugs. Had two stents fitted. Initially I thought I was doing great I’d built up walking for an hour and a half 5 or 6 days a week then I began to get breathless and tired so cut back.
Two weeks ago I had a massive pain like a clap of thunder, came from nowhere! It was behind my left shoulder blade. I googled it and called 111 they sent an amubulance I was sat in A and E from 12 noon approx, got home at 0230 approx! Tropponin levels first blood test 16, second 15 (according to hospital nothing to worry about)I felt so Poorly after sitting there all this time. Seriously I have felt so up and down, more since this incident.
Top of my stomach, just below heart feels heavy at times. I am worrying, you know the obvious!
I wondered if anyone is experiencing or has experienced anything like me, the ups and downs the tiredness the mental anguish and incredible level of anxiety, the horrible unexplainable ill feelings. I thought I would be feeling as I used to but is that also a thing of the past and to cherish each good day I get. I live alone and probably that’s why I feel so vulnerable, no one to tell me it’s all ok!
This is such unknown territory I would be so grateful to receive any help/advice, thank you.
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Hi, I read your post and find it very similar to mine. My heart attack wasbeginning of September and at first I stayed very positive, walked, tried to get back to normal etc. Then I seemed to go backwards. Been in A&E twice and, like you have found the experience exhausting and came home after hours feeling really poorly. I am quite shut off at the moment. Last week my blood pressure began increasing when it has been okay, so again, massive panic. Also beagan having panic attacks so difficult to interpret blood pressure. I just keep trying to get back some semblance of normality, relaxation techniques and better breathing. It's such a struggle so completely get where you are.Hope this helps.
Thank you for sharing, I am sorry that you are going through it too. So it sounds like we all have to remain positive and post and share when things seem to bubble over. It does help so much to hear from you and others. I trust we both do not need any more visits to A and E it is not good for our health! I do hope things get easier for you too. x
I sooo relate to your post. I had my STEMI heart attack on 20 August and had sat in A/E for 7 hours not in that much pain but more feeling basically like I had a bad dose of flu and just wanted to sleep. It was only when my blood results came back (there had been a delay due to the Labs I.T. system going down) ! and my Troponin level was a massive 15,000 !! that everyone started to panic and I was blue lighted from one hospital to another straight to the Cath lab and had an angiogram PCI with stent.
Since I was discharged I have had no real help apart from being referred to the Cardiac Rehab Team who were very good but on week 3 I started to develop symptoms of stab like pains only for a few seconds after about 2 hours of the exercise regime and also when I was at rest. So they had to discharge me from Rehab until I have been assessed by the Consultant. I had been having these since discharge from hospital really but was told they would settle. Like you I had been walking with no problem apart from feeling very fatigued. I am now waiting for a telephone follow up with my Cardiologist. However, since then I had a blood test which showed my haemoglobin had dropped considerably and I am certain this is something to do with taking the blood thinners and Aspirin as I keep coming out in bruises everywhere. My GP has now referred me for an urgent colonoscopy which I am absolutely dreading as if I hadn't got enough to put up with. I feel so down at the moment and it's like nothing has been 'normal' since that dreaded day and even though I should be so very grateful for a second chance I feel guilty because I just don't feel that way.
I also feel the heaviness around my heart and am not sure if it is the stent or another problem but I just wish the follow-up for us was better and someone would let us know what to expect when we get home. I so feel for you as totally get the anxiety and worry. I was also living alone at the time but my daughter has just moved back but it still hasn't allayed any fears.
I am sending big hugs to you and hopefully we will all get through this together.
Minnie, thank you for your reply, When I read how long you waited in A and E with a heart attack happening it is almost unbelievable except I have seen the chaos first hand. I haven’t had my cardio rehab yet, it’s in a couple of weeks. I am sorry to read that you have to have an endoscopy and it is upsetting for you, I understand totally. At least they are looking into helping you and getting to the bottom of it all. Perhaps you will feel better soon when they do.
I keep telling myself that it’s all going to be ok as it no doubt is and has been for so many people who have gone through what we are going through. It’s just sometimes this positive thinking slips and I need a bit of a chat and reassurance. It is hard for all of us. It’s a whole new world and as you say we have had no preparation for how to deal with it. It takes me off guard and I needed to reach out for support, thank you.
It’s lovely your daughter is with you.
So I am going to be positive, we are going to get through this and have to say as I keep telling myself it’s early days ………still!
Please don't dread a colonoscopy. I've had lots of them. Nothing to it if you relax and go with the flow. The clear out laxatives beforehand are more of a trial than the procedure! The "top half" endoscopy is a bit more challenging as you have to swallow the instrument to allow them access, but even that is only uncomfortable rather than in any way horrendous.
I was diagnosed with major depressive disorder about 10 years ago, and put on an SSRI, after which I suddenly found myself much less anxious. Until then, I don't think I realised how much anxiety I had. So I also took a CBT course, which helped reduce it even more.
Looking back, I'd say my depression & anxiety went undiagnosed for long enough that they pre-date my heart issues. But my sister got her diagnosis of depression & anxiety right after her open-heart surgery (22 years ago), and she still takes an SSRI.
Now, 3 months post HA is still early days. It's possible your anxiety issues will clear on their own over time. But there are also some that can benefit from getting a bit of help for it. One way or another I hope you (and pastapot and Minnie64) see better days ahead....
Thank you for taking the time to reply and share, it really helps so much. I feel that living alone isn’t the best when something major like this happens. Things just collect in my head and eventually spill out, hence my cry for help. I may look into talking to someone if this doesn’t subside. Friends shouldn’t be burdened with all my problems.
Again thank you for taking the time to talk to me, I wish you well. x
I’ve always likened the whole thing to being on a roller coaster. I’m 3 years down the road from my stemi and cardiac arrest. 3 months is quite young 😂. So try and be patient with yourself it’s hard I know. Things are different since all the heart stuff and I’m a new version of the old me. But I’m still me and you’re still you. Acceptance has been and at times still challenging but give yourself time to learn about the new you life is still there and you can still enjoy it. Good luck
Thank you for your really upbeat and positive reply. You seem so in control and accepting of it, I know there is no other way to be but it’s hard.
It’s good to read that I’m still early days although it seems like an age ago since it happened! Time is different now everything is and I am trying so hard to adjust! I’d be totally great if I was on an even keel feeling super healthy every day as all the healthcare professionals intimated it would be like. It’s the roller coaster I need to get used to and I never did like them!
Hi , I’ve felt exactly the same as you. HA in July, angiogram and 1 stent fitted. I tried to walk everyday and could only manage 25 minutes due to back and rib pain. I was having a heavy feeling in heart/ stomach area. Mid- September I went to A/E one evening worried I was having heart attack as it had worsened. Had all the tests but thankfully all ok. It seems to be digestion related as usually after evening meal. Four months on this heavy feeling has now gone. Still getting days though of feeling very tired and odd twinges etc. I’m walking up to an hour now. Like you I’m grateful to be here but think we all struggle getting used to it all. Hopefully as time goes on you will feel a bit better too. Take care 💕
Thank you for your brilliant reply, it cheered me up, I will hang on to your words of encouragement. It’s good to have an answer to the heavy heart/stomach feeling. I will keep trying to be more patient and try to stop worrying because I know it will not help anything at all.
You sound to be in a good place I will endeavour to get there too.
Yes, I add a heart attack and x2 cardiac arrests and 1 stent fitted. I was doing spin classes for 12 Months after. And then I started having bad days where I felt totally exhausted. They gradually got worse , to the point where my company finished me off sick due me not been able to do my job anymore. I was having tests at the hospital. Echocardiogram , ct, chest exray, blood tests. Then finally I was diagnosed with ischeamic heart disease. And now I carnt walk unaided and are gasping for breath
Mine is a similar story to yours. STEMI and five stents fitted. Diagnosed with Ischaemic Heart Disease, and my employer has just terminated my contract on suitability and ill health. Punished for being ill!!! I hadn't worked there long enough to challenge their decision, and had no workers' rights. Have now got to tackle the minefield of applying for benefits, which I'm not looking forward to and don't really have the energy for. Have good days and bad days - or more accurately - bad days and better days! Get tired and out of breath really easily. May I ask, did you apply for benefits? And if so, were you successful? I'm really worried about it - as I've never been on benefits in my life before. I'm 63. Feel like I'm on the scrapheap! I hope things start to improve for you soon. I empathise greatly. Take care.
Hi It is a minefield do not fill forms in by yourself Work and Bebefits website is great you psy a small fee but the info and help are great Get age uk or citizens advice abd if you are turned down ask for a mandatory appeal They use the format can you do it safely (are you dizzy out breath likely to fall) reliably will you do or do you need prompting ) ( in a timely manner ( does it take you more than twice as long to get dressed etc ) repeatedly Could you do it more than once taking in to account all the above. Photocopy and send all hospital letters with the form Uou should get Employment and support allowance at the basic rate for three months than the enhanced if they think you shouldn't be working Again get help
Hi thank you for your reply, so sorry to read you not only have this to face but also sorting out benefits. I’m lucky I have worked for my company 25 years and they have been very supportive. I am working a little from home which is what I did before my world changed! I can’t do too much!
Cappachina seem to be a great help, they have explained what you need to do. This site is marvellous with all these people and their wealth of knowledge on about almost every relevant topic.
I do hope you get it sorted and I hope you will be feeling better on more days than not! It was very kind of you to reply, thank you do take care, let us know how you get on. x
Yes mate im on esa and pip. I have worked from the age of 15 up until the age of 61 . I add no idea what i was entitled to so I phoned the citizens advice, they helped me. I do feel guilty getting money that I haven't worked for but everyone tells me im entitled to it. Theres no way I could ever work again
Alfie you are ill and you should not feel guilty about the benefit you receive. That was what is was all set up for originally,to help people who really deserved it and needed it.
I too have had to finally accept I can no longer work and found it very difficult to accept at 57. Now on higher rate esa and just filling out the forms gave me anxiety.
Have also been diagnosed with PTSD having received so many shocks from my ICD. Thank God for anti depressants, now just trying to focus on what I can do rather than what I can't.
Everyone keeps telling me that is what we have been paying tax for all those years, so shouldn't feel bad, but that is easier said than done.
I think we need to be kinder to ourselves, I'm hoping time will help me not to feel so useless!
Hi Alfie you are very kind to have replied and I can see you are not having an easy time of it. You said how well you were doing with spinning classes and life in general then it changed. That which I find upsetting is not really knowing how it is all going to pan out. Life was so simple before, wish I’d never moaned about all the silly things!
I wish you all the best Alfie, it was kind of you to take the time to answer my post. x
After the initial shock wore off I found I was very anxious after mine, I was fortunate that the hospital I was treated at offered counselling which I took and I found it so incredibly helpful. I too felt like you that I didn’t want to burden loved ones and friends with how I was feeling, although in reality I now realise they just wanted to help and didn’t mind. It takes time to come to terms with what’s happened but you’ll get there, just be kind to yourself. Take care x
Thank you Kazzie, for taking the time to reply with your reassuring words. I just may look into talking to someone. I suppose the reason I didn’t is because I thought it would be dwelling on the subject and therefore make it worse . I really think it may be worth a go. Again thank you xx
I find talking about anything that’s troubling me usually helps, seems to dilute it somehow and help make sense of things. What you’ve been through is an awful lot to process coupled with learning to live your “new normal”. Plus you need to deal with any health anxiety that such events can trigger, it’s a lot to deal with at a time you’re advised to not be stressed. I hope you find some available help to work through it all, I don’t think of it as dwelling, more like part of the healing process. Take care x
I need to aim to be as positive as you, I first need to fully accept who I am now! That’s probably the hardest part, with the lack of any certainty or control. I’ve always been a great planner and doer, things have changed. Who knows in a few more months God willing I may be in a different place. You take care too, lovely to chat with you x
I was fortunate in that I hadn't had a heart attack before I had to have a triple bypass. However, my present journey has led me to some conclusions that may help others.
Anything to do with our heart is incredibly scary. It's so fundamental and not having control when things go wrong can make us feel powerless, which feels even more scary.
Facing it by ourselves is so difficult, there is no-one to give us perspective and suggest alternative scenarios to the ones in our minds. Those going through this alone have my undying respect, it's so tough. This place is a godsend as we don't have to explain ourselves, but friends may want to know and help. We can't make that decision for them.
The journey will have peaks and troughs. The troughs don't mean we're going backwards. There will be many moments when we have to regroup and go again.
Even after 7 months, I am still being told it's early days! If ever there was an example of a marathon, not a sprint, then full recovery from cardiac issues is it.
Take the wins when you can. No matter how little. I remember being so pleased with myself when I walked up and down our hallway twenty times. This week I went for an hours walk by the sea. Both are equal in achievement.
I realise that the above has a number of generalisations, some will relate, some will not. Doesn't matter, we're basically all on the same journey and if it helps, so much the better.
Paul, I greatly appreciate you taking the time to reply to me, your message brought tears to my eyes. You said it exactly how it is, I have been doing so much wishing if only I’d done this or that differently!
You have no doubt been through a lot physically and emotionally.
So I will read and re-read your message and take solace from your words of wisdom. I don’t feel there is an easy fix I have to accept that I will no longer just be able to take my life for granted. That I have no certainty or that much control and accept that probably no two days will be the same but I am here!
Thank you again, you are so right this place is a Godsend, such wonderful people.
My mum is very nervous since her heart attack 5 weeks ago.
Her cardiac nurse advised when walking to go easy for 15 mins, then you can walk a bit faster, I think she said an hour or less, then the last 15 mins to go slow again. This must help the heart I thought?
How awful to be in A&E that long. If it had been during the week I'd have gone to the GP although they are very quick to suggest A&E for the heart and put you off going to them.
It makes you want to not bother but you must always get checked out. Maybe have a bag ready with snacks and puzzle books if you have to go again.
The GP,s here do not want to see you, it’s as simple as that. There is no alternative. It’s awful. That visit to A and E made me so much worse.
Yes I exercise I have had to drop it down to 30-45 mins 5/6 days a week. I was doing an hour and a half but began to feel tired.
Maybe this is the new normal and I have to accept and get on with all these different feelings.
It’s so nice for your mum that you are staying with her. I hope she begins to feel better soon. From all accounts it is early days for your mum, less than me.
Who knows maybe in a few months time it will be a different story. It’s the lack of preparedness for all of this that is so hard to compute. I suppose if they told us in hospital what to expect it would freak us out!
Mum wasn't told much at all either. That first 2 weeks she came here was massive and worrying. I had no idea she would be so weak and tearful, nor that she would improve so quickly.
She has plateud now and I'm unsure how much to push her. The cardiac rehab will help with that i hope.
I suppose as with most things, take it one day at a time and trust your instincts.
A&E maybe a 5am Wednesday mornings are quiet? Ha ha
I had my HA in May, 2 stents inserted. Everything you read and told is, now you will feel fine. For a month or so I felt fine (except for mental issues of dealing with it all). Well after the first month I kept getting chest pains, GP wasn't much help just said; you're on all the right medication you are fine. The pains wouldn't go away so like you I spent hours in A&E, everything checked out fine. Now after 7 months the chest pains have gone away and other than getting tired more easily than before my HA I feel good. I guess what I am saying is; it takes longer than they tell you to feel more like your old self and pain free. For me it was 6 months. After a major HA I don't think the anxiety will ever go away but the physical healing will happen, give yourself time.
Hi VC, thank you for your encouraging words. So all GP,s say the same! We all leave the hospital with the same story it’s all going to be fine now. I did believe it until it changed and I got scared!
I don’t know what to say, that’s not really like me. I’m just finding it so difficult to deal with.
I am sorry to be so down it’s not really what anyone wants to be confronted with.
I need to get myself back on a positive path and clearly I am not good company at the moment.
What really frightens me is the EF of my poor little heart at 37 . Can I ask did you have anything like that to deal with too?
Thank you for replying with such a positive message. Take care x
Hi, my heart EF was at 44 3 days post EF, it's never been tested since then, yeah I know I can't believe that either. The after care post HA is in my opinion very poor. It's such a huge major event to go through and you need answers and reassurance and its just not there. Thank goodness for this forum! Stay positive and give yourself time, it does get better.
Really enjoyed this post - sounds just about where I am after my Stemi HA and 3 cardiac arrests. I am 3 weeks in front of you but the mental health effects are huge!
I had 5/6 cardiac psycho therepy sessions which had been excellent - doing cardio rehab and feeling a bit safer - also living alone - unless a friend come to stay!
I had heart failure nurses appointment this week and what with their plant to change my meds and suggested I wear and alarm and want readings for BP and weight every day on their electronic equipment! My confidence has taken a huge dip again.
My Heart function is estimated at around 40%!
This recovery is very tricky and I’ve been told it may take as much as a year to get fully stable. 😳
Keep your focus on each day -
Stay happy as poss - watch upbeat movies and comedy nothing stressful,
Thank you for your lovely reply. Sorry to hear that your confidence has taken a dip. I would look at what they are planning as safe guarding you and giving you the correct medications for where you are at now with your treatment. I have an NHS Echo cardio on Monday then a chat with a cardiac nurse a couple of weeks later. Also next week I have my first visit to cardio rehab, I will ask a lot of questions.
It’s all such a huge event to be going through as you know, thank you for sharing.
You sound very together and very brave ☺️ I will focus on each day.
It is very kind of you to have taken the time to help me, I’m 70 too, I never felt lonely before this. Hopefully that will pass.
I’m gong to do exactly what you have suggested and immerse myself in a Christmas Movie!
I wish you all the very best with your treatment xx
Rather different case but can relate the to shoulder pain and the heavy/uncomfortable top of stomach feeling. HA 5 years ago next month. One stent. Presented as jaw pain and pressure in chest at time - no real chest pain as such. Pretty good heart function afterwards. 18 months later hospitalised again with similar symptoms via A&E. No 2nd HA, but underwent triple bypass for disease to all main arteries, so now 3 bypassed and 1 stent. For the most part, I've regained most function, and play 2 hours badminton 3 times a week and walk many miles.
However, I am plagued with "odd" symptoms that nobody seems to be able to diagnose. Unless it's particularly bad, I pass it off as just the new normal for me. If I followed the guidelines of "go to A&E with pain that doesn't resolve after 15 minutes and 2 sprays of Nitro" I'd be there every few weeks, so I don't. The spray does nothing for me anyway, and never has. Sometimes though, I do land up back in A&E, latest time about a month ago, with the symptoms you describe. Pain deep in body at shoulder level and stomach pain/discomfort, and sometimes nausea. They do troponin test, an Xray and ECG, decide that "it isn't coronary" then lose interest.
But what is it then? No idea. Could be the stent, or (in my case the bypass, or surgery damage to the diaphragm), or, because there are a multitude of different organs and processes going on in that part of the body, something completely different. I've had a battery of blood tests, upper endoscopy, colonoscopy, iron infusion, ultrasound scan, all to no avail. I guess I can only do what I'm doing. Crack on with life. Good luck!
Thank you for sharing what you have experienced. The condition and symptoms you describe when you went to A and E and your treatment was identical to my visit. If you do find anything out please let me know.
You have had more procedures and you sound great, you are certainly living your life 😁.
I hear what you are saying and I will endeavour to crack on with life,. Thank you for taking the time and for your support. x
You have had so many positive and supportive responses (which is great! 👍), but I’m not sure that I can add anything new.
I had a heart attack about 2 1/2 years ago. At the time, I felt like it had come out of the blue—just gobsmacked me—but, truthfully, I did have multiple risk factors that I probably ignored.
First, I would suggest being patient and kind with yourself. September has only been about three months ago. Your body and mind recently experienced a traumatic event—a HA and surgery with two stents. Allow yourself time to heal and to feel better.
After my HA, I recall feeling absolutely rubbish for at least four months. I was extremely weak—sometimes simply holding my arm up to comb my hair was exhausting. I was also having problems with my heart racing when I stood up, or walked short distances. Finally, this issue seemed to be helped by working with my doctor to tweak my medication dosages.
After my HA, I recall having pains in my wrists that I had never had before. This pain worried me, so I asked my cardiologist if that were a sign of heart issues. She told me, “No,” but I was still scared. I also had heart palpitations (usually at rest). One thing that I learned from all of this is that after having a HA, we tend to notice every little ache, pain, twinge, or palpitation more than we ever did before. I don’t mean that these pains, or palpitations are not real—they are real. But having a HA also causes us to have a heightened sense of any little difference, or pain in our body. The takeaway is that not every pain, twinge, or palpitation means that we are about to have another HA.
Remember, there are times when it truly is best to call for help and have a situation checked out in hospital to be sure that nothing bad is going on. However, for minor aches, pains, twinges or mild palpitations, it might help to recall that you are likely hyper-vigilant right now—constantly monitoring for possible major problems. As others on this forum have stated, it is common for most people to have some ectopic beats, or heart palpitations. These feel very scary and always cause me some anxiety.
For me, I had anxiety disorder before my HA. I still have it and always will; it is a lifelong condition. It cannot be “cured”, but I do try to control it You might want to take some time to research some strategies/techniques to help you deal with your anxiety. There are breathing techniques, mindfulness techniques, tapping strategies, total body relaxation, and others. The trick is to discover what works best for you. I also sometimes use medication to help with my anxiety—I was prescribed a low-dose of alprazolam to take as needed.
Again, be patient and kind to yourself. It takes time to get back to some sort of “normal.” You may find that you and your doctor may need to make changes to your medications. You may need to make some lifestyle changes like limiting alcohol, quitting smoking, or just adding more fresh fruits, vegetables and fiber into your diet.
Having a HA really is unknown territory for all of us. It is normal for you to feel unsure at times, and your emotions will be up and down. Try to stay positive
(1) Talk with your doctor and ask questions that you have. It might help to write down those questions so that you don’t forget to ask something important.
(2) Research information about learning techniques, or strategies to help you cope with anxiety. Consider taking some Cognitive Behavioral Therapy (CBT) for your anxiety, or even adding a medication such as Alprazolam.
(3) Start adding in some recreational exercise such as gardening—something that you can truly enjoy while gaining extra steps per day. Also try some indoor walking if the weather is turning colder. My Apple Watch can track all of this activity—time, heart rate, distance walked, step length, etc
I truly hope that you can turn the corner on all of this and start to feel more like you. It will take time—be patient with your progress ☃️❤️
Hi Smitty, thank you for your lovely words. From each message that I have received I have taken something positive on board, everyone has helped me to feel better. I can relate to a lot of what you have said and the wrist pain! Like how weird is that, left wrist right wrist very strange! I mentioned this to a doctor he just shrugged and said that it comes with the package!
I don’t drink, stopped smoking 35 years ago I have always been very active and am size 10. I am loosing weight as I never know what to cook as I can eat so few things these days.
I love a bit of gardening in the summer it’s so therapeutic, I will take your advice and look for nice relaxing meditation apps. My mind is so busy all the time it will be a challenge.
An Apple Watch is something I will look into. Thank you for all your positive suggestions.
I so appreciate the time you took to reply to me, thank you again. Do take care of yourself too 💕 🌲
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HA 3 weeks ago
3 months post stents
5 weeks post CABG x 3 
3 weeks post CABG surgery
5 and a half months after HA 
