Hi everyone, hope your weeks are going as well as they can.
As you might know, I had a HA 7 weeks ago and am waiting on surgery to close the hole in my heart that led to my HA.
I was feeling really good at the end of last week, almost back to normal, so I did a YouTube Zumba workout on Saturday morning and another bodyweight online workout on Sunday morning. I was exercising daily before my HA and this wasn't at all a strenuous workout, building on the rehab exercises
Since then, I've been back to being much more aware of my chest/heart - not pain but a roaming nagging feeling, little twinges - which I've experienced ever since being told I needed OHS in December. It did go away while I was skiing and isn't worse under strain at all.
In the last week I've been noticing a weird little hiccup in my chest - it's almost like a little double breath or jolt and I notice it more in the evenings when I'm sitting still in front of TV etc. After the HA one of the nurses said I'd had a little arrhythmia, but that it had sorted itself out after the first 24 hours in hospital. I also wear a Fitbit that claims to be able to detect AF, and it says 'no episodes recorded'.
It's possible I'm going a bit nuts from all the hospital stresses and waiting for the surgery, but I'm worried I've made myself worse. Also, I'm on a cocktail of drugs post HA that have made me feel a bit weird and sluggish and headachey - all the usual, Apixiban, Rampiril, Bisoprolol, Clopidogrel and a Statin just for fun (OK, for high cholesterol that they also found).
I'm half expecting a call from the surgeon any minute to book in my repair in May, so in some respects this is very low down the list of things to fret about - but I don't know what AF etc is supposed to feel like and I don't really know what to tell the doctors in case it's in my head!
What are others' experience of this?
Written by
LadyZ13
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So sorry to read your post and you are obviously anxious and worried about your impending surgery. I know there are many on this forum who may be more help than me but for what its worth Im twice your age and similarly stressed waiting for surgery of a different kind and the uncertainties are a nuisance. Try to stay positive, age is on your side and I hope you get news soon.
Thanks Linda, that's very kind. I appreciate your reply xx
Hello
I do not think you are going a little bit nuts at all bit having similar thoughts as most of us do once we are told there is something wrong with our hearts we then seem to tune in to every sensation and feeling one's we may have had before but never took any notice of
But have you got a telephone number for the Rehab Nurses because I would ask them as of course we are not Doctors and can only speak about our own experiences as well as you could call the BHF Nurses who are very knowledgeable I will put their number down for you
You will soon be having your surgery and I look forward to hearing how it goes x
Thanks BeKind - the mental battle is sometimes tougher than the physical one! I have found the BHF nurses helpline semi-helpful; some of the advice was sound, other guidance contradicted my consultant. I will definitely be using them when recovering from surgery! My rehab nurse has gone totally quiet on me since I told her my surgery had been postponed, and the episode with her totally knocked my confidence, so I'm happy to wait until after surgery to pick that back up. I suspect as Captain Birdseye suggests the only way to investigate it thoroughly is to wear a monitor for some days, and there's little point given they're going to totally unpack my heart and build a new wall in the middle of it - I expect it'll be all over the place for a while!
I totally agree with the mental side if all this I am a couple of years on and still struggling with that but please don't think you will be the same I already suffered with severe anxiety so think this could be why I am still in battle with what happened trying to gain my confidence back
I still would think about phoning your Rehab Nurse even if she has gone quite I would still keep trying
We can share our experiences and thoughts but I think your own Consultant if you are happy with them is the one we should listen to they have done the investigations and know exactly what is needed and why
I really hope you get the op soon as I think then the menta side to this will start to get better
Keep us updated will look forward to hearing how you are getting on x
I absolutely will keep you all posted I have about six different consultants looking after me now (joys of a HA plus CHD) and they're spread across different hospitals and have a habit of calling me out of the blue with updates - but I'm making a nuisance of myself to all their PAs 😅
Thanks for the empathy, Captain Birdseye. It's given me a term to look up and the reassurance that, if that is what they are, they're probably nothing to worry about and that up to 100 a day is considered normal range. I'd flag it but I suspect it's very low down the priorities with surgery imminent - but your experience has reassured me, thank you.
Yea flag it when you get the chance just so they know what is going on.
I guess it goes without saying but try to stay hydrated and limit caffeine and alcohol... I find I feel it more when more anxious at night too.
I feel for you and your predicament. I think alot of the problems are mental. But it is so hard to ignore any small pain or blip that we feel. I got my latest report from my clinic and basically I carnt have an operation to repair my ebstein anomoly. Is that good or bad? But everything else is stable. Therefore iam as I was a year ago. Blood pressure now under control and fluid levels are euvolemic, basically normal bodily fluid levels. And another big word haemodynamically stable. I have right bundle branch block, comes with the teratory. But normal people can have rbbb. My cardiologist said I looked well and does not want to see me for a year. But like I said somewhere else on this forum I feel like a child wanting more reassurance, empathy, just down right scared. Trouble is you go and have this test and that test and it comes back normal or normal for you, but it's like an car mot only as good as on the day. Then you are given tablets to sort one issue out they then cause you to feel rubbish or other side effects. Like you I had one sort of collapse, decided to have an ecg and bingo I hit the jackpot I find I have a problem with one of my major or very major organs and now on this constant treadmill. I suppose I am lucky iam on only two types of tablets lisinopril and spironolactone. Iam going to cut down on my anti depressants, don't seem to do much. Doctor has agreed and I just want to concentrate on how I feel with the blood pressure medication. But it just that niggle now that I know I have a disability in my heart. Even though it's kept me going for 57 years. It's hard though to not ignore it. I do understand how you are feeling, but I don't have a magic wand, and unfortunately your mind will go into dark places. Take care.
I have a slight RBBB! I'm very glad to hear yours is all stable and they're releasing you out into the wild for another year 😅 Thanks for the empathy and kind comments, always appreciated x
Yes releasing me to fight another day. rbbb and qrs186 milliseconds, I think don't really understand it all, Complicated all this. But we all feel weird little blips and missed beats. Trouble is you will only find them on 24 hr ecg test. But when I had one last year, all my little heart beat abnormalities where less than 1% over a 24 hr period. So I dought I will have another. I have got a cpet exercise test soon so trying to prepare for that. It is nice to talk to others on this forum as it makes you realise you are not alone. But it is so hard and I feel for all of us, and especially all you younger people who have found problem, I suppose if I had had ecg back when I was 20 or 30 then it would have been found. Thank you for reply. Take care.
Yes it will be interesting. My cardiologist said she want alot of effort put in. I think she thinks that since I have been on spironolactone for nearly a year and my fluid levels are normal and I don't have heart failure then I might be able to push a bit more. Past the 7 minutes and see if my vo2 max has improved. Been practicing down the gym. Up right bike and I do 10 minutes. But the trouble with a cpet is the tension on the pedels go up in a linear fashion. And it it goes to point where you can't push it any more, trouble is I just missed out on the yellow jursey, this year at the tour de france. But it is what it is and I will give it another go. Yes I will try and have a good weekend I just hope the sun comes out. Does help to make you feel better.
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