Hi all,I successfully had my first ablation 9 days ago after waiting 20 months. Some very positive early signs but alot of side effects including reflux, migraine and very sore and pain on left hand side particularly when using my left arm. I think this is all to be expected and is slowly getting better. My follow up is in 3 months. I did not see the doctor before I was discharged. Do GPs now monitor you ? There seems to be no aftercare support. I have looked for a local support group but there are none. I've found this extremely scary and live alone. My immediate family don't discuss feelings and you are expected to be stoic and get on with it. I am considering paying for a therapist to help me through some of these issues but cannot really afford it as I had to give up my career of 24 years because the afib was so bad after fighting it for 2 years. I am grateful to have had the treatment and to be alive.
Has anyone got any advise or practical information on post ablation care ?
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Sailblue
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The EP who carried out your ablation will have what's called AF nurses. Ring the hospital where you had the ablation procedure and ask to speak to one of them. So just say can I speak to one of (Your EP's name) AF nurses. It's as easy as that.
Were you not given details of your local arrhythmia nurse? Most EP centres in UK have at least one specialist nurse for just your needs. Why not ring the hospital where it was done and ask? I hope you have read our fact sheet on recovery which may help re assure you that all is well. I will add a link below.
Hi Sailblue, I was very scared before my ablation nine months ago too, and I was lucky enough to have my partner here to look after me. I can only imagine how much more scary it would be if you’re on your own, and I can see why you are feeling in need of support. Do you have any local friends you can invite round for a cuppa and a chat, when you feel up to company? I’d recently retired from a very demanding job before my op, and hardly knew anyone locally. As I’ve recovered, I’ve made a real effort to join local groups and make new friends, so I’m not in the position of feeling so isolated again, and to give me a bit of a support network for whenever my partner is working away.
As for AF nurses, the one at my hospital has been very nice and very helpful. But it’s not a quick process - you have to either email or phone and leave an answerphone message, and then they call you back in a couple of days. Maybe they get back quicker if they deem your query more important, but it’s always been a couple of days in my case. I got the number for the AF nurses by calling my EP’s secretary, after reading about them on here - it wasn’t volunteered by the hospital.
I hope you find the support you need. And in the meantime, this HU group is invaluable 😊
Thankyou for your kind words. We are definetly on the same page. I too worked very long hours. I relocated but have a couple of new friends but worry they may think I am needy so tend to see them when I am well. I will definitely phone hospital / GP as really bad pain that comes and goes and paracetamol only take the edge of for a few hours. I too have found this group very helpful.
Hi Sailblue. I took complete rest for several weeks following my ablation. Although hospital advice tends towards a return to normal quite quickly this is not the advice given by the AF Association patient info sheets. Have you got these? Ablation is quite a shock to the heart so the word you need is kindness, not stoicism. If you can’t get in touch with the AF nurses as advised by others here you may find the AF Association helpline useful. I don’t know your age, but if you’re struggling financially and over the age of 60 Age Uk will help with any unclaimed benefits - they can visit you at home and will be on your side.
Thankyou, this has been really helpful. I did alot of reading about this before the procedure but not the AFassociation recovery fact sheet. This has been very helpful as it's very different from BHF and the hospital and matches my recovery experience so far. After 10 days I am still in alot of pain that is intermittent. I will definitely be contacting my hospital or GP to get my pain management under control.
To be honest it can apparently take near a year for full recovery, although by 6 months I was more or less back to normal. The pain won’t be around much longer though, so make sure you keep taking it easy when you’re feeling better! I took meds for reflux for a few weeks and found keeping anxiety down to be a crucial part of recovery - the Balance app is very good.
I had my first ablation in March last year and have been followed up every 4 months face to face with another appointment in April. I had my ablation on the NHS but do see my EP privately as that is the only way I could get to see him personally. I do think the same process is followed though on the NHS but there may be a delay and you may see another member of the team. I did have great support from the arrythmia nurses at the hospital, I could call/see them anytime and was given these details at my pre op assessment.
Hi, do you mind me asking you how much you payed to see you cardiologist. I had an ablation in November and seeing mine in the 28th March. I would like an earlier appointment, so that may be a option. 🤔
I paid for a private consultation two years ago -- not a follow-up but the first step in getting an ablation (I had the ablation on the NHS). It was £250. The clinic I chose was transparent about its fees, all displayed on the website. If you find a clinic local to you, and there's no website, just call them up and ask about fees. They won't be rude to you; they want your money.
I pay £180 for each follow up appointment. I have to say he is well worth it. I see Professor Andrē Ng at Glenfield in Leicester. He did charge me £250 I think for the first consultation. He is the President of the British Cardiovascular Society, held in very high regard.
I had my ablation four years ago. The morning after the operation I woke up with what I now know was migraine and was sick on and off for about seven hours. Every day for the next eleven days I had an attack, some worse than others. Then it stopped.
After about seven days my grandson had taken me to A&E and I saw someone from the cardiac unit. At first he seemed quite unsympathetic, suggesting dehydration, etc. He went away for quite some time and when he came back he seemed much kinder. I'm guessing that he was told about people having auras and all that while he was away. He gave me a prescription for the migraine.
That was the sum total of my follow-up. The leaflet I was given was more about care of the wound. I have been meaning to write to the EP recommending your leaflet.
I stopped taking the bisoprolol pretty quickly and have been fine ever since.
yeah not much support post ablation if I’m honest but when I needed it post mine when it all temporarily went into the scary zone I found the AF/Cardiac nurses at the hospital were brilliant and they talked to the consultant when needed and got some good advice back to me that helped get through until I came out of the scary zone and through recovery - never had an official follow up but tbh I’m fine with that as I knew I didn’t need it - how you feel and knowing I wasn’t in AFib was the key for me - good luck with your recovery and remember reach out if you’re concerned
You waited even longer for yours than I did for mine (14 months)! I also live alone but luckily had several kind friends nearby who let me lean on them for shopping and housekeeping for the first 10 days. Working was not a possibility for the first month. Just too tired and sore, and needed lots of rest.
I second the advice to take it slowly and gently -- do not push yourself in any way -- and to make use of the cardiac nurses at your hospital. They should be available by phone and email. I asked them to review a Kardia reading last week because I've had a very up and down recovery. They agreed; they did ask me not to send in too many readings because they are so busy, but they were happy to look at one or two and gave me feedback the same day.
You were luckier than me with your arrhythmia/cardiac nurses. One such arrhythmia nurse at Barts initially said she would look at 1 or 2 for me when I urgently inquired by email re some distressing novel ecgs. So I was initially really pleased about this offered help, especially as I had no other access to free ecg interpretation. However, when I submitted the ecgs by return email, I was confronted with a different nurse who would only promise to put my ecgs into my medical record for future reference. So, disappointingly, no help at all in addressing my urgent and worrying concerns.
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