Utter Confusion!

[Kateuk1]

I wrote a while ago about not being happy with my cardiologist who insisted I keep upping my Bisoprolol even though I felt very breathless and tired and I was convinced that Bisoprolol was the culprit. His opinion is that I should live with my permanent AF and control it with meds.

Anyway I was due to go on a cruise to Iceland and went to A&E with increasing breathlessness.

I was admitted and Bisoprolol was reduced and Digoxin 1.25 added. I saw an EP who was with me a few minutes and talked about a possible pacemaker in the future.

I went on my cruise which was fine even though I am in permanent AF.

I return to 2 appt letters. One from my regular cardiologist who says the results of an angiogram (I had 6 months ago!) show some artery disease and need further investigation. The other is a appt for a pacemaker to be fitted from the EP. I have had no discussions about this and have no clue what it involves.

Am feeling overwhelmed right now and wondering if I should just get on with my life one day at a time and ignore all these doctors with differing opinions and don’t communicate with each other.

Sorry for the rant

[Kaye58]

Hello kateuk1 I live in Sheffield and regularly attend an arrhythmia group where we can ask about issues and problems like yours. My advice would be to have a look at what’s available in your area or make an apt via the Drs secretary who’s on the letter asking for a chat and why the pacer is necessary. Bear in mind though that the EP is the one who’s advising an intervention or treatment not just meds. At the end of the day when you’ve read all the pros and cons the decision is yours they are just recommending what treatment they believe to be best. I hope that’s useful. Very best wishes kaye58

[Peddling]

Each time I see an EP, three thus far, they have recommended and listed me for an ablation. Having weighed up the pros and cons I have decided it’s not for me. I now have a cardiologist who is of the same opinion and we manage my condition with medication. I am in persistent AF and take nebivolol, rather than bisoprolol, Apixaban and digoxin. Two of the EP’s wanted me on amioderone which I flatly refused. The cardiologist (my second) hasn’t ever raised it as a treatment option but has said that a pacemaker could be a possibility at some time, if and when the drugs are no longer managing the condition. For now, I can manage my symptoms and do not object to taking the prescribed medication. I know that some do.

You do need to arm yourself with as much knowledge as you can absorb re ablation. You will find endless information on this site. My reasons for avoiding it are relevant solely to me, based on emotional, medical and other issues. However I am not against the procedure and under different circumstances would consider it.

Could you take someone with you when you next see the GP or EP who could support, prompt and take notes if necessary. If not, then take your own notes and make sure you stick to them and get answers you understand.

Good luck.

[Kateuk1 in reply to Peddling]

Thanks Peddling. I will take a friend to my next appointment. My cardiologist is not the easiest to communicate with. He is “old school” and does not appreciate discussion. When I queried the Bisoprolol and asked if there were alternatives, he growled and told me it was the BEST medication and that is what I should take! End of.

I am not going for the pacemaker until I have at least had an opportunity for discussion and reflection. I haven’t heard of anyone else on here being offered that as an early option. Ablation hasn’t even been mentioned and I had cardioversion twice, one of which lasted almost two years, but was told it was unlikely to be effective again.

I agree that this site is a wonderful source of advice, information and support. I am so grateful to be a part of it

[Dodie117 in reply to Kateuk1]

You should ask to be referred to an EP as the cardiologist is more like a plumber and the EP an electrician - a specialist in heart arrhythmias. Ask for recommendations for EPs in your area on here. Also be aware that a pacemaker is not a treatment for AF as understand it.

[Gvvgvjtf in reply to Peddling]

Hi Peddling. The reason for your shortness of breath is most likely being in permanent AF, and the bisoprolol is slowing your heart down to stop later issues. I had a similar experience, and wasn't able to leave my bed for days. Amioderone helped me for a time, but it is a terrible drug and actually caused me alot if issues, including damaging my thyroid. I was constantly in and out of AF, and found doing anything hard. I then had my first ablation, and when I woke up I could feel the difference. I was active and it allowed my heart (which had being very badly damaged on LV to start healing, I had an ejection fraction of <10 % when first admitted) to start healing. My life was truly transformed, until I went into AF again after 7 months. I have since had another ablation last year February, and mo symptoms since. I run 3km 4x a week, I live an active healthy life. The reason I mention all of this, is I would really suggest you look at ablation. It seems scary, but in reality it's a tiny incision in your groin and a 1 day hospital stay. There are risks, but personally (I was considered exceptionally high risk due to my heart function) it was massively less risky then medication, ongoing heart damage and the dramatic benefit it made to my life.

If it still isn't for you, you need to have a long conversation with you cardiologist, as they need to address your fears and explain fully your options. I found some (definitely not all) of my doctors feel patients are simply a hurdle to them putting in place their plan, and treat you like a bystander. It's your body and life, do research, question them. If you're still not getting what you want, request a new cardiologist!

Good luck, and I hope you get the best help for your problem.

[jeanjeannie50]

I don't think I would agree to the pacemaker at this stage and would first find out what the arterial disease is that your cardiologist has written to you about. I thought pacemakers were to prevent the heart rate dropping too low, has yours been doing that? If so why are you on a beta blocker which slows the heart rate? I can understand why you are confused.

Jean

[charlwood35]

Massively underwhelmed by your cardio team and a shake up, if possible, looks overdue. The appointment to fit a pacemaker which has never been discussed deserves a rocket. Also share your and jeanjeannie’s confusion over the prescription of both bisoprolol and pacemaker.