It’s been awhile, but I do check the forum regularly and would like to say thank you for all you regular posters. It’s been hugely helpful to “listen on” your Afib conversations.
Brief recap of my journey so far. Diagnosed 2020 and really struggled first while getting used to the meds, the diagnosis and the lack of face to face contact during the pandemic. Mind you it’s still very difficult to get even phone appointments, so that part is still a problem.
I have been fairly stable and with time have learned to cope with the condition and to manage Afib pretty much with meds, diet, relaxation and as much excercise the beta blockers allow (5mg a day).
For the first year of diagnosis I continued to get fairly frequent short episodes that self reverted after a few hours and then until last year only two a year.
About a year ago my Afib nurse recommend I get myself on a waiting list for ablation. I was and still am very undecided about having one. I have read all the leaflets and followed conversations on the forum and still wonder if I want it done while everything is fairly stable.
This year though, I have started getting more frequent episodes, but they still self revert and can be managed with an extra dose of Bisoprolol as a pip (as recommended by the nurse). I do understand though that it’s better to ablate when you younger (69) and when you are not in permanent AF yet. The cons are risks of operation, often needing more than one, you would still have to be anticoagulated and have some form of rate control after your ablation and it’s not a permanent cure.
Here comes my actual question at last.
Would you recommend I paid for a private EP consultation, bearing in mind that I have since my diagnosis in ER, never seen or spoken to my cardiologist who has referred me to ablation.
I understand it will cost around £300 and they can refer me back to NHS for tests if needed. Does anyone know if they will have access to my medical records and results of the tests already done? Would they be able recommend if I was a good candidate and if so, what kind of ablation.
I have been on the waitin list for about a year now and believe the waiting list is about 18 months at least. If the EP convinced me to go for it, could I then just take up the appointment when it materialised or would I have to go on a different waiting list.
Also does it matter which private EP you see or would they have to be someone connected to the cardiology department I am already under?
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aFibber55
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Do it. May not be as much as that. Ablation is not a cure, no but I've had no AF now since 2008. OK it took three goes but after the first one you aren't worried as you know it is no biggy. Some people are lucky first go. You don't read about them here because they are away enjoying life and have no need to visit, other than occasionally to crow. LOL 😁
I was in a similar quandary as you, I actually requested and got referred to an EP from cardiology after 2 and a half years within the NHS. I went with the view that I didn’t want an ablation but needed the conversation about it. I had some questions and the answers pointed to me having the ablation which happened 3 months later (see my bio). All the should I shouldn’t I was replaced with confidence to go ahead after the consultation.
So my answer is yes if you have the resources to do it, try to find out if the EPs at your hospital do private work.
Some types of ablation are successful but others need another and another. But it seems to me alot of patients end up with very low heart rate.
As more research is done procedures will do better and I see more natural fixers in the future.
I am not a candidate for cardioversion, ablation and I control my arrhymia and heart rate by just 120 mg Diltiazem AM and 2.5mg Bisoprlol Pm for BP control. I have been on this regime helped by a private Heart Specialist for over 2 years. Yes it is persistent but symptoms are few. At night my rapid heart rate, now controlled falls to 47avg. Its my normal rate and meds do not change it.
You're need to weigh up what you think are your fors and againsts. No person is alike.
Read all about the many types of ablations. Success has been made in Japan.
Thank you Joy2theworld49. It’s good to hear all sides of the argument. My gut feeling has been to go the medication route, but I do feel quite poorly with it, so more frequent episodes are starting to make me think perhaps I should go for ablation after all. Information is power. Thank you for your reply.
I would, given your relatively stable situation, stay with the NHS. I am in the same position and did pay the £200, but, you know, I don't think it would have mattered. At least my physical health wouldn't have been any different. It helped my stress levels, of course.
What I think is worthwhile is to have a scan occasionally to check the state of the heart, ultrasound or MRI. I would press for one as this seems not to have been offered.
Thanks Steve. Sound advice. Not having easy access to EP or cardiology is probably not causing as much physical damage as we think, but anxiety levels go through the roof and that doesn’t help with Afib. In general the lack of access to medical care is hard to get used to.
Without doubt it was the best thing I ever did and the best couple of hundred pounds spent. Depends upon who you see and if and the hospital they work at as to whether or not they will have access to NHS notes, almost certainly not on first appointment. Of course once on their list, they will have access to your NHS records at the NHS hospital. It also depends upon what access you have. If you are on the NHS app and your GP and specialist who use something like Patients Know Best then you would be able to share anyways. Take as much information as you can, ECG recordings, this is where Kardia traces are very helpful, blood results, BP recordings and HR. The more data you can provide, the more information your consultant will have in order to give a prognosis.
If nothing else, the time you can spend exploring options will help and can be reassuring. Specialist will normally want an ECG - for which they will charge and blood work - which you should be able to get from your GP, if they are helpful, I’ve never had any problems.
Go well armed with the questions written down, take notes and preferably a second person who has a bit of medical knowledge who can pick up the things you may not think of.
Where in the UK do you live? Travelling to a Centre of Excellence is often more productive than expecting to see someone at a local hospital.
Thanks CDDreamer. I live in Bucks and am at least in theory under High Wycombe cardiology Services. Not seen anyone there since A & E diagnosis 2020. Very nice and helpful specialist nurse phone appointments annually, but even those have now gone to every 18 months. Couple of friends with different and more urgent heart problems also waiting for unbelievable long periods to be seen. It’s all a bit scary.
Thanks for the tip to go armed as much info as possible. I keep Kardia recordings of each episode and have access to all my test results. I also photograph all the result letters so as long as I have my phone, I have it all with me and accessible.
In the past this has helped greatly and although it shouldn’t make any difference, it shows I am not going to go away easily🤣
Definitely go to a private EP. I had terrible anxiety when my AFib came every other day so I made the decision to find one. I did it and had an ablation, and am happy to still be in sinus , even though I am on a low dose of meds. I am still on my EP's list and if my AFib gets worse and I need another ablation eventually, I will have one. As my cardio nurse said, if it's not broken don't mend it.
Since having a pacemaker fitted around two years ago, have only needed a blood thinner to help avoid strokes.
Prior to this I was on Bisoprolol which made me feel quite fatigued, plus had no energy. So very pleased to come off it. Some people may well be perfectly ok with it.
Going private for a meeting with a Cardiologist who specialises with the 'electrics' of the heart will give you a pretty fair conclusion as to where you stand and also will no doubt advise what tests will be required to make a decision re future.
These days all information whether from GP or NHS or Private Consultants all go to a central point and allows the ability of your chosen path to be viewed by them. Very useful as good decisions can be taken with up to date information.
As an example I have recently become breathless with ankles and calves swelling, A visit to A&E where blood test and an ECG indicated no damage to the heart, but an early indication of Heart failure. I was put on a 7 day course of a water tablet. Via this meeting a letter was sent to my GP asking to check on my current tablets and to discuss with myself where changes were required.
That evening I had booked a telephone call from my Cardiologist to discuss the information. She said all the details were available and she had the up to date information from the NHS. The conclusion to the call agreed that my heart was having trouble pumping blood from the bottom part of my body to return it to my heart. She has advised to have an Echo and an Angiogram to help decisions. She also said in my case a new type of Pacemaker with two or three leads instead of my current one would be required, or maybe a change in medication may be an answer, or a combination of both.
The benefit of a discussion with a Cardiologist at least provided answers as to the next steps.
So for £300 I have a clear path to follow, now the decision will have to taken on time required from NHS on tests and stages of next steps, or should I go private.
To be honest all this has taken a few days, well worth while I guess
Thank you so much and good on you being proactive. Glad you are being looked after so well. I think at least 50% of medical care is being listened to and getting up to date information and that’s what’s so hard to get unless you drive it yourself, which can be tricky when you not feeling your best.
I so long for those times of GP face to face appointments when you actually felt some human contact. I am sure the GPs miss that too. I am so old as to remember home visits too, buts that feels like a fairytale now.
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