This site is a wealth of knowledge and common sense so I wonder if people could share their experiences with me.I had a PV ablation for Afib in May 2023 in an excellent Leicestershire hospital and had brilliant care but since then have not been seen by anyone - but I have been given a date of September 2025 for my first face to face appointment, only 28 months since I left the recovery room! I was due to have an echocardiogram but no appointment was made so I had one done privately and the report was sent to and received by the hospital for analysis and to provide fresh data for discussion. I had a disastrous phone consultation in December where the doctor had not seen my latest echo results and used the pre ablation one instead- but was able to write a summary letter noting that 'on examination the patient was stable' despite the fact he has never seen me. I now need to know what state my heart is in - am I sensible to go on long walks and to the gym - and of equal importance, what is my current diagnosis for my sake and for Travel Insurance purposes.? Should I just celebrate being asymptomatic and shut up - until I'm not OK? What experiences have you had with follow up appointments and care after your ablation?
Many thanks for reading my query/ rant!
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Nakesero
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Rant away we will do our best to offer support .My heart goes out to you and I feel your despair totally.
I think your GP is the one you should ask all your questions to, but perhaps you've already done that? When you take your pulse in your wrist do you feel an even beat? Have you any idea now whether your ablation in May 2023 was successful? For your EP not to have a face to face with you until next September 2025 is ridiculous. Could you get a private consultation with him before then?
Are you feeling well when you go walking or to the gym? If I felt well enough I know I would want to continue. What other choice is there, we all want to live our lives as best we can and not sit and give up doing things we enjoy.
I've had AF for 19 years and in that time have had 3 RF ablations and numerous cardioversions. I'm now a lot better and can live a fairly normal life but still have AF but at a low rate.
Will wait for your response before giving diet advice etc.
Many thanks for your supportive reply Jean. When I had the extremely poor phone consultation in December, I raised these questions and told him that both my Kardia device and BP machine suggested I was in Afib and persuaded him to set up a 24 hour holder test. This stated that I had frequent atrial ectopic and an 'APB burden of 19%' - which I still don't fully understand, although when I phoned the helpful Cardiac Rhythm nurse she correctly pointed out that it is a 24 hour snapshot and not indicative of any diagnosis.The pre op and operative care I had was brilliant but it's rather like preparing for and sitting a long exam but never getting the result. Part of the problem is that I'm of a generation that recognises that I'm not the only person needing heart care and others may well have greater needs so be patient and don't make a fuss. Unfortunately it's not working.
Yes, wearing a heart monitor for just one day is generally of little use.
These are some tips I've learnt over the 19 years of having my AF.
1. Be Aware you are most unlikely to die from Atrial Fibrillation (AF). I used to think that the way my heart bounced around I would surely be found dead next day. Still here though!
2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, reducing your intake of red meat and having more chicken and fish, not allowing yourself to become dehydrated, cutting back on sugar, alcohol (wine contains sulphites which can be a major AF trigger) and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't! They have helped some people though and my AF now is not so severe.
3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly these attacks make some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt! In our minds AF is only as bad as we have experienced, for some attacks are mild for others they're more severe.
4. Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or if you're online. If you do your heart will protest. Also avoid tight clothing around your waist or chest.
5. Try supplementing with magnesium, any type except oxide (I use glycinate from YourSupplements and also take taurine, zinc, vitamin B complex, D3, K2 & C). I feel fine and there's little I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.
6. If over 60 I would make sure that you’re taking an anticoagulant to prevent blood clots forming and causing a stroke. Note that they do not thin the blood in any way, just stop it from clotting so quickly. You should not notice any major difference in the way you bleed.
Morning Firstly,I would find out who your consultants Secretary is and contact her/ him with your concerns. I've found them very efficient. Mention you would take a cancellation appointment, they like that as it fills gaps.
Secondly,my experience has been thus: ablation June 2022, first review Dec 2022.( phone) Follow up to that July 2023( as had to follow a course of monitored action) face to dave with registrar not my EP.
Follow up to that April 2024( cancelled by them) now August 2024.
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