New Member first posting

Ok where to start I am 67 and first suffered a/f in my late forties which curtailed my sporting background which included running a large No of marathons and alike

To cut a long story short I had 3 cardio conversation and two ablations and various drug regimes all of which I “broke through “ during the course of time

Unbelievably after my last ablation two years ago it was discovered in a follow up after feeling unwell that I had anomalous venous drainage(AVD- blood pumping into the wrong side of the heart) a congenital heart disorder since birth which was considered to be the underlying problem and was if not surgically treated life threatening

Why it was not discovered earlier I don’t know the consultants were very defensive on that point

Open heart surgery and 3 weeks in hospital followed and having made a slow recovery I was able to get keep fit etc and for a while felt great

I have been on the usual drug diet flecanide apixaban and bisoprolol since my operation

Sadly having had numerous monitor tests as a result of feeling unwell again with all the anxiety that goes with it I have been advised that although not suffering from full blown a/f I have had both ventricular and atrial ectopics at various times

I still now feel unwell left sided chest pains on occasions which come and go irregular heart patterns which normally start when at rest - I could go on

I am told that there is nothing to worry about easy for the consultants to say but it does not relieve the anxiety that goes with it

I am at a loss as to what to do next my GP )never get the same one twice in the surgery ) just tells me to go to a and e which is a complete waste of time that haven’t even heard of AVD and post op issues so I then wait to see the specialist consultant (luckily I have private health although not for much longer as with all the costs to date they are trying to price me out) by which time the heart had returned to normal

It feels like living with a time bomb (suggestions on a post card !!!)

There you are at least I feel better for getting it off my chest so to speak thanks for reading

Good health to all

[CDreamer]

Hi and welcome, you have found an excellent forum with lots of knowledgeable, helpful and supportive people.

I am afraid I haven’t heard of AVD but I do have another rare condition which most people haven’t heard of and most doctors don’t know how to deal with as they very rarely come across it so do share your concerns and yes, anxiety is the real enemy here. Ectopics are usually more uncomfortable than AF, or at least that was my experience and many people complain of affects multi ectopics and it doesn’t matter that the cardiologist tell you that they are benigin - they don’t feel benign do they?!!

You are probably aware that endurance athletes are more likely to develop AF than the average so limiting exercise and knowing limits is importantly. The book The Haywire Heart was the first book to look at heart conditions in atheletes and you may find it a useful read.

Your real enemy is going to be the anxiety which will increase both the symptoms and the regularity of the ectopic so finding relaxation techniques is really important. Breathing exercises are the best place to start - learn and practice how to breath using your diaphragm and to be able to slow your breathing down to about it 6 breaths a minute. Daily practice and then practice when feeling symptomatic is important. The breath needs to be slow and even so breath in slowly for count of 5 - 6, hold breath for 1, breath out for 6-7, hold breath in and repeat. This can really help ectopic and practiced regularly will also help the physical symptoms of anxiety, CBT will help with the ‘worry’ thoughts. Your GP, any GP, can and should refer you for CBT which is normally a referral for assessment and then either a short on line course or 6-12 weeks of face to face sessions.

Hope that helps, best wishes CD,

[Hidden in reply to CDreamer]

Thanks for advice I will try the breathing and CBT

M

[BobD Volunteer]

If you are suffering ectopics go to the search facility and type in Ectopic Breathing. There is an excellent slow deep breathing trick which normally stops these quite quickly. Yes they are benign but I know they can be darned irritating.

[Hidden in reply to BobD]

Thanks for advice

[Hidden]

Hi and welcome to our forum ! You can vent off as much as you like here...we are very understanding.

You have certainly been through alot. As a layman I can't understand why AVD was not picked up earlier...seems unbelievable. Did you have an echocardiogram before all this ?

The ectopics business are a real pain. Many of our members suffer from these to a greater or lesser extent. If you key in Ectopics in the search bar in the top right hand corner this should bring up lots of info and ways to cope .

Many of us have purchased a Kardia app for our phone by which we are able to record any funny goings on and can then save these recordings to show or email to our specialist. Are you aware of this device ?

Sandra

[Hidden in reply to Hidden]

Thanks for the response yes I do have a Kardia app which I try not to look at too often as it makes me more neurotic trouble with that is it often says possible a/f ( consultant says it’s multiple ectopics) or unreadable but counter to that it’s helps when it says reading is normal

I can’t believe AVD was not discovered earlier surgeon told me he had not performed many ops for the condition at my age as it either was discovered earlier or patients were dead (a testimony to my fitness apparently)

Thanks for advice on search bar

M

[irene75359]

You have such a lot going on, and I do hope you get it sorted out. Anxiety is so debilitating and given your history I am not surprised.

I am very interested in your late diagnosis of AVD (I hadn't heard of that one either). But my daughter failed a very through army medical as the examining doctor heard a 'rush' when sounding her heart. An angiogram revealed she had ALCAPA (anomalous left coronary artery from the pulmonary artery) although her heart had developed an odd workaround where it was fed de-oxygenated blood. She was 20 and six weeks later underwent open heart surgery - by a paediatric surgeon as babies invariably don't survive this without rapid intervention, far less reach adulthood. The point I am making is that not at any time until that examination was this condition picked up, in spite of all the normal childhood examinations, difficulty in breathing on occasion and worst of all, me taking her to the doctor twice when she collapsed after strenuous sport (she was very active).

I am thankful that this major problem was resolved for you, albeit late, and wish you all the best in your other problems. Just a thought. You may have PTSD, she did and had treatment which helped enormously.

[Hidden]

Thank you for the reply I am pleased to hear that your daughter has recovered her condition sounds very similar to AVD basically in my case pulmonary veins draining into the right side of the heart instead of the left

This was only picked up when I had an MRI and specialist echo I suppose if it was discovered at birth in the fifties they would not have been able to do much about it at that time but still fairly poor that it took so long after all the other issues

I am interested to know where your daughter had her op mine was at the Riyal Brompton one of the few places that carried out the procedure

Thanks for the ptsd/ counselling suggestion which I will probably take up

With best Wishes Malcolm

[irene75359]

She had the surgery at the London Bridge Hospital (fortunately she was still under our medical insurance at the time) by a surgeon who was based at St Thomas' Hospital and Guy's. She is now under the care of the Royal Brompton for a coronary aneurism which may or may not be connected to her original problem. But she is fine, had two babies at Chelsea and Westminster with exemplary care and a whole raft of tests before and after the births. Best wishes to you too.