My AF journey takes a turn for the worse! - AF Association

AF Association
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My AF journey takes a turn for the worse!

reedman
reedman

I’ve not posted for a while but lurk quite often and I thought it was about time I contributed to this splendid and supportive forum. Cutting a long story fairly short. Quite a few years ago I was diagnosed with AF after a GP examination following a severe pain in the chest, I was electrically cardioverted unsuccessfully twice and then placed on a drug regime (Warfarin, Bisoprolol, Ramapril, later changed to Dabigatran and Bisoprolol was dropped). I was told by GP following a letter from the cardiologist I had seen as a follow-up to the final failed cardioversion that there was nothing more to be done since I was asymptomatic and treatment priority for scarce resources, understandably, would always be for those whose quality of life was much worse than mine. The years passed, I had a few wobbles and scares and a couple of visits to A + E as a result of severe pains in the chest and one following an incident of syncope. I left A +E last time having been prescribed Digoxin 125 mcg and my GP prescribed additionally Candesartan 4mg; the visit to A + E had revealed a concerning drop to my ejection fraction from the low 50s to around 25%. Still largely asymptomatic (although I still felt a little tired) I just got on with things putting down my increasing lethargy down to increasing age now 76 years.

Out of the blue, as it were, I received a letter from my GP practice inviting me to take up their offer for an examination by a visiting Consultant Cardiologist as part of their scheme to monitor all their patients experiencing heart failure. I spent about 20 minutes with him during which time he asked quite a few questions from which it was obvious that he had read my medical history very thoroughly, I was beginning to be impressed. He referred me for a cardiac MRI scan, requested a 72 hour Holter monitor and an echocardiogram. I left with a feeling that this chap was seriously “on the ball”! A few weeks passed and I had all the tests he had asked for and I received a copy of the letter this consultant had sent to my GP. Please bear in mind that I was previously resigned to just carrying on taking the pills since there was “nothing to be done”.

In brief he wrote: “ the cardiac MRI and echogram demonstrate a dilated left ventricle with an ejection fraction of 15% and hypertrabeculation demonstrating a diagnosis of LV non-compaction”. He then referred to the Holter monitor results: “showing AF with heartrate between 59 and 172bpm, mean of 94bpm and a short burst of non-sustained ventricular tachycardia. There were some symptomatic episodes which demonstrated uncontrolled AF with isolated ventricular ectopics. The ECG demonstrated a heartrate of 110 in AF with left axis deviation and a left bundle branch block with a QRS of145 millisecs”. He then went on: “ this gentleman has severe LV impairment due to LV non-compaction with poorly controlled AF”. He recommended up titrating my current meds and added Eplerenone 25mg daily. Then came the most unexpected recommendation that: “in view of the episode of syncope which I am now highly suspicious is related to an episode of ventricular arrhythmia” I should be offered an implanted bi-ventricular defibrillator!

My apologies for this rather long post but it does go to show that just putting up with things can be exactly the wrong thing to do and who you see regarding your AF is probably the most important variable in any following treatment. I am still quite stunned by his letter and shocked that none of this was previously noticed by any of the health professionals that have examined me over the years since my original diagnosis. Incidentally, as opposed to atrial arrhythmia (AF) ventricular arrhythmia is a killer (sudden cardiac arrest)!

27 Replies
oldestnewest

I can believe every word you write having experience a' similar'.... event myself Afib with a thyroid problem background..... both undetected. Then a hole in the heart crept into the mix .I had moved GPs ,found myself someone private for the thyroid prob. and this debilitating situation that had gone on for some years began to change....and I doubt we are rare cases.

I wish you good luck with whichever road you are advised to go down and hope you can begin to feel well and have safer health soon.

BobD
BobDVolunteer

Reedman I too would be appalled to suddenly find this out. It is as if previous doctors have decided to ignore your problems and us a "stick plaster " approach. I agree that one needs to be procative in any heaalth matters and not accept staus quo. I do hope that things do not deteriorate any further and that the ICD helps you very soon.

I feel for you reedman - we are inclined to be trusting and stoic about our conditions and, although this must be a shock, there is an upside in the shape of a detailed diagnosis and treatment.

Hopefully, your ICD will dramatically improve your quality of life and thank you for posting this. I intend to read it to my husband who has had a similar experience with being too stoical. Best wishes.

Hidden
Hidden

Wow, that is quite a story! With an ejection fraction of only 15% and you feeling a " little tired", I am always amazed that our minds often give us the good news even though it might not be the total picture!! Heres hoping 2019 is your best year in a long time!

Hidden
Hidden

This is so awful it beggars belief.

I believe we have to be really proactive in all our treatment and investigate further if we are not satisfied even if that means a second opinion.

I really feel for you...i would be mortified and very angry. I do hope that the treatment now underway helps to resolve things.

Best wishes

Sandra

Even though your results are shocking and disturbing for you, i have seen many stories from people who, having been put on correct meds to ease the hearts burden, have had a significant increase in EF. Do not give up. Thank you for sharing your most helpful post with us. Very best wishes for improved health.☘️🍀

Goodgrief! A worrying tale indeed ,glad you seem to be in professional hands at last and sounds as if you are beibg looked after at last.

Im afraid I have always been a bit of a terrier with medical professionals,one once described me in a letter to my gP,who shared it with me (long standing professional relationship as a 'forthright young woman'

I also worry about the fact of diminishing budgets,and also the sheer pressure in front line medical care,where things like this can happen.

All the best to you xx

" I received a letter from my GP practice inviting me to take up their offer for an examination by a visiting Consultant Cardiologist as part of their scheme to monitor all their patients experiencing heart failure".

The treatment up and down the country varys so much. "Monitoring" has just not happened in my case (3 years), unfortunately very much a non existent word, as such I have had to learn as I have gone along. If I had not pushed, I would still be at the stage of; "You have got this for life", take some Bisoprolol + an Aspirin", bye bye - next please.

This condition in many respects has been around for as long as it has, due to ignorance of the medical profession. It is compounded by the fact that they ask your age, this minion knows that it affects the young as well as seniors - why dont they? One of the GPs in the practice that I attend, keeps on referring to it (Afib) as "Palpitations"! It annoys the hell out of me in the sense of - there is as far as I am concerned a massive difference. I guess that I will have to educate him.

Good on you for persevering.

Hidden
Hidden
in reply to john6

John. ..i had to give a little chuckle at your GP s reference to ' palpitations 'and your annoyance! We all feel the same. I can recall being wheeled into Resus with heart battling away over 180bpm (fast AF) and medic saying..' I understand you're having a few palpitations ' Grrr!

Finvola
Finvola
in reply to Hidden

😩😡

reedman
reedman
in reply to john6

The monitoring scheme for heart failure patients at my GP surgery is a new service as far as I know; perhaps it is something that will, or should, be replicated all around the UK.

john6
john6
in reply to reedman

I would like to think that you are right. Unfortunately, the way that this country is going, I do not see it happening across the board - hope I am wrong.

Is this a Christmas Gothic Horror, Scandinavian Noir or a Grimm's fairy tale with a happy ending? I hope the last, and that the icd helps.

Hidden
Hidden

I think that this is one of the most important stories to be shared on here lately and will make us all more determined to ensure we get the follow up we need. Thanks so much for sharing.

In my area (East Sussex) many AF cases are now referred to a specialist GP led Community Cardiology service overseen by hospital cardiologists. I was unhappy with this and was in the fortunate position to be able to see a Cardiologist privately and I am now back in the NHS being followed up by hospital cardiology.

Given your experiences, if I were to be discharged back to GP care and was symptomatic despite treatment, I would not hesitate to consult the Cardiologist privately again.

I’m sorry that you will have procedures and further treatment to go through, but glad that you will be safe and protected by an ICD.

All the best for 2019

Pat x

10gingercats
10gingercats
in reply to Hidden

It is happening in oxfordshire as well.If you need a thorough Afib. checkup you have to travel to a surgery out in the sticks that sets itself up as a cardiology unit occasionally .....and some people are being sent a very long way.......then you have to go elsewhere to get the echo done!perhaps the intention is to get rid of a few people as in you get so fed up with all this running about you will, if you can afford it, go private.

Thank you everybody for your collective responses and empathy; they are much appreciated. The great value of this site is the sharing of experiences that give insight and guidance to others. For my part I have gained a lot of knowledge and valuable advice and as I wrote in my post and was overdue in putting something back! My appointment to discuss the ICD procedure is on the 8th Jan, how long before the actual procedure I don't know. HNH one and all!

Wow. What a story. Thanks for sharing it. I think we all put so many things as 'down to our age' and feel we have to put up with them. I am so pleased that it is all being addressed now and look forward to hearing how you progress. Good luck for a new and improved quality of life.

Hidden
Hidden

Thanks for sharing your story. I'm glad that this doctor has helped you. Your story is the latest of the many I've read here in my few months at this forum that have inspired me and continue inspire me to speak up, advocate for myself, make changes, and stay determined to get to the bottom of what's going on, no matter how uncomfortable the consequences. This has been the greatest source of support in joining this community.

I wish you all the best! Happy New Year! 🎉

Further to my previous post I have just had a further consultation with the Cardiologist dealing with me and have given my agreement to the biventricular defibrillator that he has recommended. His letter confirming the procedure (although no firm date as yet) contains some further information. The device to be fitted is a CRT-D (usually 3 lead) but he will only use 2 leads to the ventricles to better synchronise their function, he now has additionally, post op, prescribed Entresto and states, if following implantation, that, "if he persists (me) with poor AF rate control and poor biventricular pacing on his pacemaker checks, we will refer him for an AV node ablation". That will mean, I will be 100% pacemaker reliant which bothers me a bit. I have read that although AV node ablation completely knocks out electrical signals from the atria to the ventricles they will still beat albeit slowly but nevertheless keeping a person alive for long enough to to seek medical help? Any thoughts?

Hidden
Hidden
in reply to reedman

I hope someone who knows about this will reply to you.

It sounds to me like one of the slightly scary things that one feels one would not wish to have but when one hears from people who have had it done, they seem to rate it quite highly.

oyster
oyster
in reply to reedman

Confusing, isn’t it? After ablation of the AV node, the pacemaker takes over the function of the AV node. No question of having to seek help urgently. A big plus is that your ventricles would be beating regularly.

reedman
reedman
in reply to oyster

The regular beat I would look forward to; the 100% pacemaker reliability bit.....

oyster
oyster
in reply to reedman

If the pacemaker fails your ventricles will continue to beat at their intrinsic rate around 40 bpm. Battery failure is a very gradual process over months and with modern boxes with a remote sensor function the technicians will know about it long before you are aware of any problem.

reedman
reedman
in reply to oyster

Thanks Oyster that's comforting to know!

I've now got the date for my CRT-D implant procedure as the 11th Feb 0800. Can't wait! Will let all interested know more after a week or two after that. Thanks again everybody for your support.

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