Aching heart for a week now.: Hi, I'm new to... - AF Association

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Aching heart for a week now.


Hi, I'm new to this site so I will give a small insight into my heart condition.

I was born with TOF (Tetralogy of Fallots). Unfortunately I was one of the old generation to have this so I've had further complications. I had my original repair in 1982 then in 1992 I had my first pulmonary valve replacement, then I went on to have my second pulmonary valve replacement in 2013, a pulmonary artery repair and I also had a tricuspid valve repair done which wasn't successful for me.

After my heart surgery I got afib. I was offered the ablation, but after going over it with the consultants we decided the risks for me outwayed the benefits. Plus it would only give me 6 months free from it if it worked, which wasn't likely.

I have pacing wires in ready for that to happen in the future and I have aortic, pulmonary and tricuspid valve leaking. I've been told I'm in heart failure and to live my life now as they can only pro long it for me.

I recently lost my disibilty car and can't get to my gp. (I live very rural). I'm on warfarin, bisoprolol, ramipril, digoxin, butamide and spironolactone.

Over the last week my heart rhythm has been all over the place, especially at night time. (I'm getting no sleep at all).

My heart is aching to the point I'm feeling so tired with it. I really am at breaking point and need to cry. Does anyone else's ache so badly?

My next appointment with my cardiac team was October, I rang last week and now have one the middle of July as my symptoms have gone horrendous lately. I get dizzy, light headed (to the point of fainting), odemea, breathlessness, tiredness, muscle weakness, plus more....

If anyone else has this aching feeling I would love to hear from you. I really don't like ringing my cardiac nurse unnecessarily.

25 Replies

I am so sorry you are going though all this. It sounds like your condition is complex and it is probably inappropriate for any other AF sufferers to offer specific advice. I think that calling your cardiac nurse is absolutely appropriate and he/she is the best person to approach for advice. From your description of your symptoms, you may well be able to have the appointment with your consultant brought forward to this week or next week. I hope you get the advice and treatment you need to subdue your unpleasant symptoms. Good luck!

Hidden in reply to paulalex1313

Hi Paulalex1313, yes my cardiac condition is very complex. I was just wondering if anybody else's afib plays up so much that there heart aches from it. I've sent my cardiac nurse a text message and hope she replies today. Thank you so much.

Hi Sarahwoo, Paulalex offers excellent advice, I believe in listening to your body as it is probably wiser than you are and it seems to be shouting rather loudly! You are obviously in distress and need some support and unfortunately we are not in a position to offer more than words.

I think like any other muscle the aching, along with all your other symptoms, may be an indication that your heart is struggling and I entirely agree that ringing your arrythmia nurse and or your cardiologists secretary yourself and or ringing your GP is not only appropriate but an imperative.

Sometimes you kave to shout very loudly and unfortunately she who shouts loudest tends to get attended to whilst the stoic tend to be ignored, a very sad reflection of our society, but unfortunately this is what I have learned,

So sorry about losing your disability car, that must make it very difficult for you.

Please do not hesitate to ring either 111 (for advice) or 999 if in extreme distress,

Very best wishes CD

CDreamer in reply to CDreamer

PS - our local surgery offers a transport pool organised by local volunteers to drive people to and from their appointments, perhaps this might be an option in your area? You don't know until you ask so maybe research on line or ask when you ring the GP surgery.

Nannie-C in reply to CDreamer

What a great idea, not heard of that before. Must be lots of surgeries and patients tha t would benefit

Hidden in reply to CDreamer

Thank you for advice CDreamer. I don't shout very loudly as I dread my next heart surgery, although I know it's coming. But I will listen and I'm shouting today.

RING. That's what they are there for. I am certain that they would rather have you call unnecessarily than not call when it was. From the symptoms that you describe, I would certainly call for help. If you are still unwilling to call, try the people on 111. It's like speaking to your GP's nurses, and they can certainly advise you on what to do. However, we are talking about your heart, and your life, so my recommendation is "WHEN IN DOUBT, RING"!

I don't have any aching feeling in my heart, but I am in awe of your fortitude in suffering all these symptoms and not wanting to bother the cardiac nurse! Please do ring her straight away, and tell her exactly what is going on. It sounds as if you need an urgent review of your condition and medication to relieve your symptoms. I have no other useful advice but hope you get some help and soon. Please do it!


Thank you all for your comments. After another restless nights sleep and having my afib playing up all night again I will ring my cardiac nurse today. I have her private mobile number, but I only use it when I am really ill, and feel that maybe this is the time I should use it. I've also had a bad stressful weekend as friends came up to visit and my friend had a heart attack whilst at ours. This has probably added more stress to my over tired body as we have them here to stay for a few extra days.

I will keep you all updated if and when I get in touch with the cardiac team.

Sarah how dreadful you had to cope with your friends sudden illness when you are feeling so unwell yourself. Really pleased to hear you are contacting your nurse. I was a specialist nurse ( different specialty) and as I got near to retirement the workload was such that we RELIED on our patients to contact us if they ran into problems. We were so grateful if they did as there just weren't the hours in the day to keep a close eye on all those we would like to. If by any chance she is not available ring another source of support. Don't feel you are struggling on alone.

Hidden in reply to Bagrat

Thank you so much. I feel like I'm disturbing her as she has given me her private cell phone number. Unfortunately before I had my last heart surgery I was made to feel like I was faking it by a hospital nurse when I went in ill. (Which I was) luckily my heart consultant done a mri scan on me as my heart looked good on the echo and ecg because they found that 2 valves were leaking like sieves. It's now left me with a badly damaged heart.

CDreamer in reply to Hidden

Sarah I encountered that sort of attitude from a nurse once and it nearly resulted in my death - she forced me to eat when my bowel had shut down and it was only my literally screaming at a passing doctor which saved my life. I learned to scream after that,

You are the expert on you and how you feel, doctors and nurses are the experts on the mechanics.

Hidden in reply to CDreamer

Thank you. I'm slowly learning to scream. Lol.

Sarah, don't worry at all about disturbing professional people - they are there to advise and help and are willing to do so. One ill-mannered nurse doesn't represent them. A young GP once told me off for not wanting to bother A&E with my troubles and said 'you are a cardiac patient, dial 999 if necessary'. The fact that you have a private mobile number means that you are a trusted and important patient.

Your heart and mind have had a lot to cope with over the weekend with your friend's illness and the awful shock of being there. Your cardiac nurse is the best way forward to help and advice.

It's terrible that you have lost your mobility - where I live, also very rural, there are community groups and church groups which organise transport for appointments and visits. It might be an idea to ask about it in your area.

I hope you get some relief when you see the nurse.

Very best wishes.

Hidden in reply to Finvola

Thank you Finvola. We do get help with transport to the hospital, only! But I need to give 48hrs notice or they refuse to do it. Unfortunately I'm not able to get to my gp at all. The nurse comes out to do my bloods every other week or weekly which it's been for the last 8 weeks, as my INR level has never been stable in 3 years. But they can't bring my meds so I rely on neighbours to collect them for me. My family all live so far away, which doesn't help.

My cardiac nurse is great, but she takes a lot of leave which doesn't help. If I ring up the receptionist then I can only deal with my consultants as I'm a congenital heart disease patient and the other staff are not allowed to book us appointments. It's a pain in the bum as last week I had to wait a week to speak to her as she was off.

CDreamer in reply to Hidden

Then ring 111 or 999. Which part of the country do you live in? Services do vary considerably around the country and it seems to me that rural areas do suffer from a lack of adequate services.


My congenital heart nurse has just messaged me and explained that she is off this week so I need to contact my gp and see them. I'm hoping they will do a house call as I can't get to them.

She said my aching could be from my afib or something else so I'm slowly getting somewhere.

Finvola in reply to Hidden

Sarah - I think you should call an ambulance and go to A&E. You have pain and have a complicated heart condition and your nurse is not available. Do it and get help without waiting and worrying any longer.


You are clearly a lovely and considerate person BUT now is the time to think only of yourself. If you cant get through to your cardiac nurse, ring 111, they will almost certainly tell you to go straight to A and E and will probably order an ambulance which will take care of the transport problems! You need to be taken care of right now and at the very least given reassurance. My fingers are crossed that you will get the treatment you deserve. X

I had serious side effects from medication i was taking post aortic valve surgery and when my fifth appointment with the cardiologist was postponed, i broke down at the receptionists desk (they only told me of the postponement when i arrived for my appointment) Finally an emergency doctor looked at me and immediately told me to stop the medication i was on and when i finally saw the cardiologist the following week, he too confirmed i shouldnt have been place on that specific medication. what i am saying is, it took months before someone listened and ended up with me breaking down at the hospital before someone took notice. I am concerned that you sound very down and stressed in your original text so please get help immediately. Perhaps the answer is to go to your local hospital accident and emergency and at least get a doctor to check you out. Agree with other replies in this post, you know your body best and if it dosnt feel right, it probably isnt. good luck.

Sarah, I feel a 999 call would be reasonable under the circumstances. They will advise and at the least send a paramedic to assess. You need to call your heart ache chest pain for them to spring into action. I fear the GP might be a slow path to the help you seem to need.

So sad we have to fight for the help we need when we haven't the energy.


Sarahwoo 1980 With your complex heart history and heart ache, you really must dial 999 and get a paramedic responder to examine you and decide on the next move. The Paramedic can arrange a Ambulance to go to hospital for further investigations.... they can contact your GP for a urgent consultation or contact another Nurse to advise you. Please never wait for a convenient booking with your GP if you have Chest discomfort ,especially with your heart history! The ambulance service and Hospital will not mind you calling on their services .... you are the sort of patient who needs special attention and rapid response when you are feeling unwell. IF in doubt -call them out! I sincerely hope that you seek a urgent result to check your Chest ache give you a good MOT. All the very best to you.

Definitely DON'T wait for a GP visit. Just 999 as you have chest pain.

Guidelines of when to go to a and e when in af states when accompanied with chest pain! !! Please listen to the others on here dial 999 and get the attention you need and deserve good luck and let us all know how you get on 💓

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