Post-ablation care

Many people post here describing their ablations. I find these first-hand accounts interesting as it's likely that I will have to have one in the not too distant future. What comes across strongly is that many people experience symptoms after their ablations and are not sure whether these are significant or not. I wonder if the post-ablation advice on leaving a hospital is adequate? I'm struck by the number of people who seem to have been left high and dry and are unclear whether to report symptoms or who to report them to. Is this an accurate impression?

[Hidden]

Of course it varies. Some hospitals issue information sheets and I expect they all vary in content but from what we hear, many are woefully inadequate. This is a personal view, but I think many hospitals see this as a routine procedure and once it’s done, it’s done. This is why two factsheets were produced by patients for patients. Hope everything goes well for you……

heartrhythmalliance.org/res...

heartrhythmalliance.org/res...

[CDreamer]

Without doubt most of the hospital information is inadequate - which is why the advice sheets were written in collaboration with patients but even they don’t cover everything.

I notice the AFA have a new paper out for ablation procedure which is much more comprehensive but still only gives information from a medical viewpoint.

Also people vary, experiences are different and what may seem to one a very minor incident can be very worrying to others.

[Physalis]

I suppose those of us who had no follow up are expected to talk to our GP. When I had several days of migraine following my ablation and felt pretty bad, my grandson took me to A&E. The cardiac doctor was, at first, not very helpful - it was probably due to dehydration etc. However, he went away and when he came back he was much nicer and more sympathetic. He had probably found out that it was a rare complication after ablation but he didn't tell me that! Fortunately, after eleven days it stopped.

Maybe the EPs should devise a list of all possible complications to give to GPs to help them deal with patients post-op. I'd rather they got on with operations instead of spending afternoons sitting around asking people if they feel alright.

Having said that, I was told to take the bisoprolol before and after the ablation. I dropped it pretty quick but I suspect a lot of people are still taking it and other meds unnecessarily.

[Singwell]

Glad you raised this and I see Hidden has posted about the guides produced by this forum which are excellent. That said, because AF itself is such an unknown people do seem to have very varied experiences.

[BobD Volunteer]

That is precisely why we produced the two fact sheet on preparing for and recovering from ablation. Few hospitals seem to issue any real information on what to expect.

I was told all would be normal in a couple of days and thought something dreadful had gone wrong when it wasn't.

What was enlightening was that many senior medical staff seem surprised by much of what we discovered, for instance few had heard of the migraine aura . I had great difficulty finding why this occurred and even if it was connected to the ablation until one senior EP in London let me in on the secret.

You must of course accept that we are all different with widely differing levels of acceptance, pain and mental resilience so what one patient may shrug off, another will find most distressing.

[kalgs in reply to BobD]

I found the information sheets helpful. Of course what is lacking is that personal information that you need when you preparing to leave after the ablation. I know from personal experience that some of my symptoms were certainly not covered by the information sheets. I’m not in anyway criticising them.

I give an example. I had a conversation with my GP who was going to send me to a A&E department. However, after a telephone conversation with the cardiologist at Barts I was told that what I was experiencing was not usual but okay and no need to go to the A&E department. If I’ve been told this prior to leaving the unit I would’ve been a lot more comfortable.

[kalgs in reply to BobD]

Totally correct

[Elli86]

That’s spot on Sam. I had mine done in st barts. Op went well hopefully and was cared for by nurses ( all but one 🙄) brilliantly but the info they give you for recovery is abysmal.

I was told I could continue weight training and exercise the following day 🤣 here I am 4.5 weeks later still struggling.

Luckily this forum gives brilliant info about it so I was under no illusions about how difficult recovery could be.

The fact sheets on here are very informative but even they can’t cater for everyone’s individuality in recovery. So many variables it seems, it’s crazy. But plenty of people on here to share experiences with so help and reassurance is never too far away 👍

[Desanthony]

It’s a shame they don’t hand out the AFA Pamphlet.

[kalgs]

I think you are correct. I was in Hospital last week for my cryo-ablation. The care prior to the ablation and after the ablation was excellent. What I think was lacking was whilst I was in the room for the procedure no one really stayed alongside to let me know how things were proceeding. When I returned to the ward upon discharge I was given a basic leaflet . So I left the ward not knowing really what to expect in respect of ongoing effects. I did have a conversation the following day with a nurse who told me that awhile back they were able to spend time with patients post ablation. However, they don’t have that time now because of the sheer number of patients passing through the wards.

[jeanjeannie50]

Just before my first ablation I asked how long it would be before I could climb mountains again and was told within a few days. I thought once I had the procedure I would be instantly cured and able to do exactly what I wanted. In reality I had two and a half weeks off work and could only go back then because it was mostly a desk job. My attacks became worse and it took two more ablations to get me where I am now. Five years after my last one I'm in constant AF, but at a low pulse rate and I feel fairly normal.

I still wish I'd been made aware of how much diet plays in AF and gone down the route of only consuming additive free food and drinks. I thought ablation was the easy route and that was wrong.

Jean

[belindalore in reply to jeanjeannie50]

Seems to me if Drs would find out just how healthy a person is before they do an ablation, maybe more outcomes would be better. Drs should look at the person's overall health problems and check for any deficiencies of nutrients and get them as healthy as possible before these procedures. I just don't think enough Drs are doing this.........

[jeanjeannie50 in reply to belindalore]

They probably make more money doing ablations.

[belindalore in reply to jeanjeannie50]

Yes they do. But I wonder how many may not really need them. Evil has permeated the healthcare systems around the world. I remember how different Drs were when I was younger. I did trust them then. Now I don't.

[TracyAdmin Partner]

Hi there, I am sure many of the members will offer you supportive advice based on their own personal experiences, but please contact our Patient Services if you would like some help or information on [e-mail]

[Lucymoo]

Yes I think the aftercare is dire. I woke up with a persistent cough and following a few really off it couple of weeks and trying to get support from the cardiac team which was nil I spoke with a out of hours GP who luckily had had two ablation himself he was able to talk me through my symptoms and amend my medication which helped. I think I need another ablation this one hasn’t worked confirmed by a 5 day holter recording but I don’t think I can face another one due to poor support so not sure what to suggest

[Ppiman]

I can't remember reading of anyone being left high and dry and I have such respect for our wonderful but genuinely hard-pressed doctors and nurses that I would forgive it for being for an all-too-human reason. At our main cardiac unit, while I was there, I learned that there was just a single cardiologist on call. Just one. Imagine that. What kind of local and national management and government allows for such a scenario, I just don't know. No wonder our NHS was so quickly easily overwhelmed by the covid pandemic.

Steve

[Hidden in reply to Ppiman]

The lack of support after an ablation seems to be a structural problem. One solution might be for each patient to have a nominated cardiac nurse as a first point of contact in case of any post-ablation problems/queries. Of course, I don’t know if this is logistically feasible, particularly during the pandemic. At the very least there should be a fairly clear algorithm for patients along the lines of : “if you have symptom x contact A and E immediately” or “there is no need to worry about symptom y unless it lasts for more than five days, in which case...”

[Ppiman in reply to Hidden]

My daughter-in-law is a nurse and I get the feeling that they do their best with not just limited resources but also with such a variable intake in terms of numbers and issues. I don't know what the answer is, but the shortage of consultants seems to be acute.

When I had my ablation, phoning the arrhythmia clinic was very hit and miss. I think what can't easily be dealt with is the psychological aspects which vary so widely but often lead to the patient thinking they are far worse than they are.

Steve

[stoneyrosed]

I had an ablation done in March this year discharged the next day and no one has spoken to me since , despite facing a few problems and trying to chase up cardio nurse.

[Sfhmgusa]

I think the information on discharge is inadequate and cannot for the life of me understand why hospitals do not use the fact sheets produced here.

The only other area that I feel is not great and not in the scope of the AF sheet is the wound care of the catheter insertion point(s) The info I was given was sparse to say the least, and as a microbiologist I think it was sparse to the point of being hazardous

Steve

[seasicksurf]

Create a daily log for yourself and be prepared to discuss all your symptoms, drug effects, or weird beats when your see your doctor next. You will see your progress over time. We all need to take our own recovery into our own hands—and leave the doctors hands free for the next person in need.

[Hidden in reply to seasicksurf]

Yes, and its also recommended in books like "The Afib Cure" that you use simple mathematical tools to look at any correlations and associations between say, particular kinds of foodand episodes of AF.