hi everyone, my eagerly awaited cardiologist appointment happened yesterday and I was hoping to come away less confused/ daunted . That’s not the case .
my previous scan was terminated as my pulse was too high so I’m booked in for another one soon .
Whilst there I went through my list of questions especially about medication and ablation. He did not paint a positive picture of either , I know we should be aware of side effects and risks but the way he talked about medication has left me feeling deflated .
I know a lot of you take medication and I’d love your feedback especially if these have caused other arrhythmias which are apparently a common side affect .
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Shopgal67
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Do you know if you saw a Cardiologist or a Registrar or another member of his team. It is so disheartening if you do not get the level of help you deserve especially at the current time when things are so difficult in the NHS.
I know it shouldn’t have to be, but could you consider seeking a second opinion privately with an EP. If that’s possible, should cost around £300, if you can, ask your GP to refer you. If you see someone you have confidence in, it should be possible to be transferred to their NHS list.
Yes I was seen by a cardiologist, I understand he has to highlight potential side affects but I feel like I’ve got more questions now . Maybe I was hoping medication would help control it but he’s left me feeling apprehension now .
As per Flapjack, except I would see another cardiologist. You need to be confident with your medic & although a private appointment only gives you an extra 10 mins or so this can be key to coming away with less anxiety.
I say Cardiologist rather than an EP as at your stage the former more drug orientated is more relevant than the latter more ablation orientated nb. if you see a carpet salesman he will sell you a carpet.
I had a ‘car crash’ appointment with a cardiologist this year - said I had permanent AF (now in NSR), too late for ablation which he didn’t rate anyway, should increase all my meds (since had to stop BP meds as causing dizziness etc). So I really can feel for you!
I agree, if the letter you should eventually get doesn’t make things clearer an EP is the way to go. Incidentally the AF nurse I saw afterwards was brilliant and the follow up call from a ‘colleague’ cardiologist was excellent too so it’s a bit the luck of the draw sometimes.
mine definitely seemed to be down playing an ablation, not very successful, can trigger other problems etc . I do know there is an EP at my hospital so hopefully I get to see her .
if you are one of the fortunate people whose ablation works, which I believe is 65% of people and after five years, the number goes to 50% success rate, then you are very blessed. Some things we’re not really told such as that many people will need multiple ablations. the other thing that I had to research with my GP is that ablation is not a stroke prevention as it was presented when it first came out. In most cases you have to remain on blood thinners, which is the reason that I would want to do it in the first place if I did it , so do you research and decide why you’re having an ablation. If you’re having terrible symptoms when in atrial fibrillation ablation can be very helpful in hopefully keeping your heart in rhythm. If your heart shows that it’s healthy on the echocardiogram and you don’t have debilitating symptoms when in atrial fibrillation then as I have been doing and it is a process of learning, you need to think about why you’re having it . I’ve decided to put it off this year because I’m not debilitated when I’m in atrial fibrillation and they are working on new methods and also I want to see how the Watchman improves in hopes of getting off blood thinners. Another aspect to think about is medication. I am on blood thinner and I only take a beta blocker as needed as a PIP if I had an ablation and something went wrong and even if something didn’t go wrong, I could end up on more medication then I’m on now . I don’t have an answer for anyone but myself, but I’m just sharing some things that I’ve been thinking about over the past years. I know that you will make the right decision and if you’re not in an emergency situation, you can research and discuss with your doctors. All the best to all of us on the a fib and other health journeys!💜
He did tell me that ablation is variable in its success! My paf is not too debilitating at the moment, triggers my anxiety which I’m learning to deal with. Interesting to hear you are using a beta blocka as a pip , I think that would appeal to me more to be honest. Thanks for your advice.
At the time AF mugged me in January 2010 (age 65) I was detained in hospital for 6 days during which time I had all manner of tests etc. On discharge the Cardiac Consultant discussed with me the way forward and I rejected Cardioversion and Ablation in favour of the medication route.
Now, coming up for my 14th anniversary I am still on the same party bag of drugs ( with some minor tweaking here and there) and with no adverse side effects. I have been fortunate though in that I found a trigger for my AF events, food and food ingredients, once with the help of a Nutritionist I dealt with this I still kept to my medication and now I can't remember the last AF event, definately 18 months ago possibly 4 years ago. But I still remain on my party bag of drugs and so long as I stay like this I will not change.
That’s good to hear , glad you found a trigger . I’ve got PAF and still learning about my triggers. I was hoping to find out about PIP but he was putting me off with side affects! It’s bad enough having this with out adding to my list of problems, I guess it will be trial and error then and I may be as lucky as you and have no negative experience .
I am very sensitive to medications so am leary of them but I use Flecainide 200mgs as a PiP and find it very successful for me at this point in my AF 'journey'. So far (fingers crossed) it stops my AF in about an hour. I take 10mgs of Propanolol also to bring my heart rate down. It's very mild which is what I need - I can't tolerate Bisoprolol at all - and my normal resting HR is pretty low so I don't take a beta-blocker other than as a PiP.
For me personally PiP has been been the best way forward.
In the two years since I was diagnosed with AFib I've have one 8 minute face to face with a cardiologist who displayed zero interest in giving me any information about anything. On the plus side he suggested exactly the PiP regime that I was going to ask him for so I was grateful for that. Cardiology seems to be really struggling here in the UK and is definitely a postcode lottery, judging by what I hear from folks on this forum. I do hope you get some proper help with finding the right approach for you. It can be so disheartening when you have one small opportunity for advice and reassurance and don't get it. Some medical practitioners seem to think that exclusively communicating worse case scenarios is helpful and others seem to poo poo any discussion of risks vs benefits. There is a happy medium somewhere out there!
It's miserable to come away from such a downbeat consultation and I agree with the other posters that a second opinion from an EP is a good option.
Of course there are side effects and risks but there are also benefits and helpful effects from any therapy - the consultant's job is to explain the balance between these, in the light of an individual patient's needs and symptoms.
I have taken Flecainide for nearly 10 years and it has completely stopped my AF but it did cause side effects which are monitored by my cardiologist and assessed as minor in relation to the marvellous effects on my quality of life and wellbeing. I have slightly lengthened QT in my ECG trace and have had short runs of Atrial Flutter at the beginning of treatment. Anti-arrhythmics will only be prescribed for a patient with normal heart structure and usually after an echocardiogram.
I hope this helps you and that you can get answers to your questions related to your need for control of symptoms.
Edit - the Atrial Flutter was caused by Flecainide but my cardiologist felt it was not severe and could be ablated if necessary.
I had a car crash Cardiology appt about 18 months ago, and I didn't even see a Cardiologist, so well done you. I saw an Arrhythmia Nurse, but the outcome was the confusion you described, and no advice about how to properly use the PIP flecainide and bisoprolol I had been prescribed. Then in Haematology I only saw a newly trained young pharmacist, and no satisfactory resolution of the real stroke/bleed risks associated with my unique medical situation. So I am still uncoagulated as I try to understand better for myself. Not ideal though.
That’s so disappointing and frustrating for you , we rely on these experts to help us through these situations and it’s gutting when you leave feeling like that .
When I first had AF some 10 years ago I was referred to a cardiologist at my local hospital. I assumed all cardiologists were the same and knew nothing about EPs. My AF was very symptomatic and prevented me exercising. He never discussed ablation, put me on a beta blocker and PIP flecainide and never understood why PIP was not a solution for me as I used to run but this would induce AF (my first incident was whilst out running) leaving me breathless. As flecainide took at least 20 minutes to work this was useless when out on a run! He never listened, shrugged his shoulders and said I just had to live with it. Then I discovered there were EPs at the Bristol Heart Institute and got a GP referral to one. At the first appointment he got what my issues were, recommended ablation and said he could resolve this but it might take three attempts! Sure enough after three ablations I was AF free and ended up running the Bristol 10K! Sadly, my wife died last year and the trauma from her sudden death has induced more AF (there is published research on bereavement and AF) necessitating a fourth ablation in February which was unsuccessful and now I have too much scarring for another one. Big a combination of medication and acupuncture is keeping it under control.
I’m so sorry for your loss. There seem to be many things that medicine is catching up on, regarding the heart. My AFib really kicked in after a stressful year - losing both my sisters, and my husband being diagnosed with prostate cancer. He was just attending outpatients for those decisions on treatment, when I ended up in the daycare unit. Luckily his op went well.
With these less than successful consultations - I often feel like it’s communication with the patient that is really lacking. Definitely seeing an EP is a great idea. I had a private appointment lined up with my consultant, but then he got in touch anyway so I cancelled. I think that for a private consultation there is no need for a referral, at least it was never asked when I phoned to make the appointment. Now that I’m in permanent AF, I’m wondering about getting echocardiograms privately, if there are no annual or occasional scans on the NHS.
So sorry for your loss , my father in law died recently and the stress definitely made it worse! Interesting to hear about acupuncture, I’d thought about it a couple of times as I practise qigong and it really helps ! It’s still a learning curve at the moment for me .
I often feel more confused after a consultation. I think that's the nature of the event with raised anxiety governing everything.
From what I've read, the potential side effects of anti-arrhythmic medicines such as flecainide and sotalol, i.e. those used to try to return a heart to normal rhythm, are much more serious than drugs used to slow a high heart rate, i.e. beta-blockers such as bisoprolol and calcium antagonists such as verapamil. In my case, I was told that I couldn't take either flecainide or sotalol because of this extra risk.
I would always be guided by your own doctors who know the full situation regarding your own individual background. The heart is such a complex organ and its long term health is so important that to generalise can be risky.
Thanks for your reply, I am wary about all medications but obviously I’m going to have to take something at some point . BB seems the lesser of two evils !
All doctors really are not equal - I would ignore GP’s who have very limited knowledge of all things related to AFib - I’ve had some shocking advice from a few GP’s on this. Also all Cardiologists are not equal - I saw a fantastic Cardiologist and she told me straight that she was a “plumber” and I needed an “electrician” for specialist treatment - This was after I had finally made a private appt with an EP - Just finally had an ablation so fingers crossed this sorts - all positive so far
Hi, I assume you mean by scan an echocardiogram, until they have a report from that I don’t think they will start any real treatment other than to assess you for anticoagulants.
In my experience the order of events
1. Consultation, prescribed Apixaban and smallest dose of bisoprolol.
2. Echocardiogram to check heart structure
3. Follow up consultation
4. Holter monitor for 48 hours (no episodes captured)
5. Exercise stress test on treadmill, just walking at increasing pace.
All these above events will lead to a treatment plan if required.
When you’re first aware of the AF it does seem a lot less urgent than you would expect and as long as you are not too symptomatic they don’t do very much initially. If you have any unanswered questions, consider contacting the consultant’s secretary, I’ve found them to be very approachable and helpful.
Here’s a link to Patient Information if you haven’t already read it.
Interesting that I never had 4 or 5. Maybe because I developed AF just before the pandemic hit? I was lucky to get a private appointment with an EP in early March 2020 and the rest I learned from hanging out here.
1, 2 and 3 were private for me, late 2020 and number 5 was just in August this year after me chasing up on my 6 monthly review (over the phone) after 13 months. I also got referred from cardiology to electrophysiology and had an ablation 13 days ago. You really have to push for yourself if you want things done unless you are unwell enough for A&E. Hopefully knowing the investigations required will help others ask the right questions.
Yes, in that sense - having ended up in A and E 3 times I was extremely lucky yo be fast tracked for ablation in April.2021 and then again in March 2022. Fingers crossed that one continues to hold.
Brilliant advice thank you , I’ve got a cac and echo I believe. I’ve been told to get a watch that will track my heart rate and record ECG because I have paf . Apparently that will help with treatment moving forward.
In 3 years, I have captured every episode (over 40 episodes) on my Apple Watch and only one episode has been captured on an official ECG at my GP Surgery and that was after seeing AF on the watch and ringing my GP. None of the tests and investigations I mentioned earlier detected my AF episodes.
I find the watch invaluable but not everyone would agree, they can cause more anxiety in some people and you need to be aware of their limitations as they are not medical grade instruments. Looking at your heart rate every few minutes is not helpful but if you feel something is not right then the ECG function is really good in my opinion.
I need it to prove I’m having these episodes as my 48hr monitor only picked up one minute of paf but I know I get longer episodes but they need the evidence before we discuss further treatment. I can go a month without an episode but recently I’ve had a lot more stress and they have been showing up more often !
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