First check up post ablation

[Frances123]

Had my first check up today at Liverpool Heart and Chest Hospital. Only saw a registrar or a “reggi” as she introduced herself as. Apparently Dr Todd was on holiday. She was nice but fired questions at me and as soon as I started to answer she was tapping away on the computer and then asked next question most of the time while still looking at screen and typing. Didn’t feel really listened to like that.

She asked length of time on average in afib and it’s about 25-35 hours. When asked about last time (Christmas eve) I said 6 hours but added that could well be because for the first time ever I was able to take 150mg extra of Flecainide straight away. Said previously I either wasn’t in a position to take extra or it was too late as I believe it needs to be taken at onset. She still said it was an improvement since ablation and yes it was but she didn’t take on board it could well have been the Flecainide too.

I have to go back in another 6 months and if all good start reducing Flecainide. Think she mentioned possibly start reducing in 3 months and see how I am at next check up but can’t remember. I will wait and see what the letter says. That’s a bit scary after 15 years but good as well. Hopefully other things like my tinnitus will improve then.

Am I right in thinking if she was a “reggi” that would be as a cardiologist and not an EP? Was a tad disheartened as chose Dr Todd and Liverpool because of recommendations and centre of excellence and knowing I was under the care of an EP then at first check up I see a registrar? Might be doing someone and injustice here but as many say with Afib we need to see the electrician and not the plumber (or something like that). Also as she said she wasn’t familiar with my case.

One last quick thing. I know blanking period can be 6 months and some still improving or only back to normal at 9 months but can my ectopics still improve. They have greatly already. Don’t feel I’ll like I did with them or get long runs but still get affected by them.

Thanks everyone for being there.

Love Frances xxx

[Shcldavies]

I am afraid no one can provide the definitive answers you (and all of us) are looking for. The experts are good but even they do not know. What they do is basically 2 things:

The EP will be very skilled in his job of carrying out ablations, yes some better than others but the success of an ablation has many factors, all we do by getting what we believe to be the best EP is improve of chance of them getting it right.

The EP, Cardiologist, GP do not know 100% what the effect will be of the drugs they offer, it is down to their experience of others like you, sometimes the drugs work right away but mostly it will be a trial and error process lasting months or years. Critically what they will do is know what is safe to try and sometimes this can be a concoction of drugs. We are left in their hands, we must never try to change what they prescribe but we must tell them what our condition is like on the medication in order for them to re-asses the treatment. If we over or under describe our condition we will never get the right treatment.

The "Reggi" would not have the same experience and hence competence as your normal EP but you never know, their experience may well put them in a better position to treat your condition. It really is trial and error and it is not necessarily a bad thing to be treated by different doctors.

I am nearly 1 year post ablation (Have posted about my journey) and yes it takes time to recover and the ectopics do reduce in frequency and severity. I still get some, they tend to come 2 or 3 times a day for a few days then none for for a few days. I do not worry about them any more as I have been arrhythmia free since my ablation last February. I would not be surprised if our hearts continue to improve for much longer than a year after an ablation. I am relieved to say that my main concern now is how would I react if I had another attack - it would be devastating after feeling so good for so long, long my this continue.

[Frances123 in reply to Shcldavies]

Thank you for replying.

Oh yes I am aware of what each does and they are not aware 100% of the effect of drugs in each of us. After all we are all different and one cap does not fit all.

I have 15 years experience of Afib but only just learning about ablation first hand. I understand what you said but in my case feel the reggi was not in a better position to treat from things she asked and said, but I can only speak for myself. I go back to my wanting to see the electrician and rather the plumber.

I know there can’t be definitive answers and I was sharing my experience of first follow up and I guess getting it off my chest. I was really wanting to know is if there are such people as EP reggi’s and can ectopics still get less?

Thank you and yes I have read your journey.

Frances xxx

[Shcldavies in reply to Frances123]

It is difficult to know what is best, in my case the referral from the GP to the Cardiologist to the EP was just 3 months which is pretty good compared to some but not as good as it should be. My ablation so soon after was just because the medication (Flecainide) the EP prescribed, after 3 months us, gave me very bad Aflutter (at one point the crash team were called). Following the ablation he told me that I would be back to "normal" in 7 days and prescribed Bisoprolol and Digoxin. A few days later after a collapse I was back in A&E with Afib (never had Afib before). The Cardiologist said that what I was experiencing was normal for the first month or so and reduced my meds by half. I then had concern about my Heart Rate/BP and went to the GP, who seemed to know much more about the recovery, he stopped all meds and said that it would take 6 months or longer to get over the ablation, he also told me to monitor my HR and BP, if it went high I was advised to take 1.25mg of Bisoprolol only, which I did after 2 months Med free. Been really good ever since.

What I am trying to say (albeit in a very protracted way - sorry) is that perhaps some EPs are not so good on the recovery side, certainly in my case the GP was more "with it", in fact my Heart Nurse was more knowledgable about recovery than the EP. Relating my experience in your position I am suggesting that you should not rule out potential benefits of seeing "other" medical staff, In our position I really think diversity can be beneficial for us.

[Frances123 in reply to Shcldavies]

Yes, I do agree (I think) but as i have only seen my EP twice it’s a bit too early to say for me. My GP is good but with things like cardiology or as with my breast cancer he says to contact the team/nurse as he doesn’t want to interfere with treatment and/or they are the experts. I have to admire him for his honesty.

I haven’t called the arrhythmia nurse except in the first 2 weeks when things were a bit tricky as on the whole I am quite well. I thought the ideal place to ask a couple of questions would be at follow up as I didn’t need answers right away and Dr Todd was very good at explaining things then after procedure and with how I was feeling.

As I said to Wilsond I will wait and see what letter says and if reggi has got things wrong or missed things out then I will get in touch with EP/secretary or yes the arrhythmia nurse. A good idea.

Thanks

Frances xxx

[Lilypocket in reply to Shcldavies]

Hi

I just wanted to ask what condition your ablation was for. As after it you had an episode of Afib and said you had never had that before. Was it for ectopics or Flutter?

Wishing all the best.

X

[Shcldavies in reply to Lilypocket]

It was for an atrial tachycardia that morphed into Aflutter after taking Flecaininde with a higher dose of Bisoprolol. During the EP study they found that I had MAT which could not be completely ablated

[Lilypocket in reply to Shcldavies]

Ok thank you for your reply.

[Cookie24 in reply to Shcldavies]

Well said

[Gowers]

Like you I was once seen by registrar & not the cardiologist. Nurse & his secretary told me later when you come for your appointments 1st check the cardiologist is in clinic that day & just tell the nurse directing you to the clinic area you need to see him & not someone else. (No problem since)

[Frances123 in reply to Gowers]

Thanks Gowers. When I looked on the monitor that calls you to whatever room it said Dr. Todd’s clinic was in 6 rooms. 3 on time and 3 running a few minutes late. When nurse checked I’d had echo done she said she (registrar) was waiting. I queried then where Dr Tod was and she said he wasn’t here. Asked registrar casually as I was leaving and she said he was on holiday. Letter said I would see Dr Todd or one of the team and I stupidly thought as this was first checkup it would be him. Will make sure in future.

Thanks

xxx

[Gowers in reply to Frances123]

Yes, when you have appointment letter you expect to see the named registrar. Very often though, staff don't know until the actual clinic if they will be there. Few weeks ago for example my cardiologist was "on call" for any medical emergencies. Sometimes, if they have young children they will be away during the school holidays so worth checking dates either side.

[wilsond]

That's my gripe too. We are advised to seek EPs with best reputation. I saw mine privately first meeting ,once since and registrar's otherwise. I can email EP.

But when I asked if he would do ablation he said he didn't know. So IF I have it,I may meet the person on the day and have no idea if it's their first ablation or their 2000th!

I understand your frustrations. Could you contact your EP with your concerns,? A letter or email via their secretary ?

Best of luck Frances!

[Frances123 in reply to wilsond]

Thank you. I saw Dr Todd privately for initial consultation but was treated NHS. He said at appointment he would do it and he did.

I was more frustrated at reggi’s quick fire questions etc and a personal feeling of not really being listened too. I will know more when I see letter. If there she has got things wrong or missed things out then I will get in touch with EP/secretary for sure.

Could you not get in touch with your EP and share your concerns? If it isn’t him doing ablation he might know beforehand who it could be and you can then check their track record, even if it’s a couple of possible names?

Frances xxx

[wilsond in reply to Frances123]

Good idea! I'll check them out!

[KMRobbo]

My EPs registrar was pretty competent. He actually did my flutter ablation !

[Frances123 in reply to KMRobbo]

That’s nice to hear. Thank you. xxx

[Frances123]

Good afternoon people.

I do hope I haven’t upset anyone with my comments about seeing a registrar. That was the last thing I wanted to do but feel I could have worded things better.

I’m all for people learning and getting ahead in their careers and if I can be of any help or a part of that then I am all for it.

I was disappointed not to see Dr. Todd as there were a couple of things I wanted to clear up with him from my ablation and I wrongly assumed I would see him as it was my first appointment since then.

The registrar was nice enough and friendly but I became a little disheartened with her quick questions and not letting me answer more than yes or no mostly, like a check list, and not having an opportunity to ask anything.

It is why I posted Friday. Partly to see if anyone else had had similar appointments but mainly to ask if there are such people as EP registrars or just Cardiology registrars and to ask if my greatly improved ectopics could/would improve even further?

I really am sorry if I confused people, came across as ungrateful or was a pain. I am not using it as an excuse but feel at times it is difficult to find the right words to say what you mean in emails or to explain situations, especially without tone of voice to back it up.

I am so very grateful for all the help this forum has given me over the years. It has been a long but very educational journey so far. I have learnt so much about Afib/arrhythmias/the process/the heart etc from you and of my own reading. Ablation is a tad new but I’m getting there.

Sending love and hugs and wising you all a happy Sunday.

Frances xxx