Appointment today with new EP to discuss way forward with my arrhythmias
- by Gemita
- 2023-01-16 17:45:58
- Checkups & Settings
- 501 views
- 22 comments
A signalling failure delayed and cancelled train services into London this morning, so a difficult start waiting on a freezing cold platform. But I wasn’t late because when I got to the clinic it was still teaming with patients. It was supposed to be a morning clinic and I was seen at 2.30 pm.
Although rushed, my appointment went well. I liked my new EP although I sensed quickly he didn’t really want to be too aggressive with my arrhythmias and proceed immediately to a regular Pulmonary Vein Isolation ablation. What he did offer was an appointment to see a clinical cardiac scientist/electrophysiologist, to work with her to adjust some of my settings that might, just might help with the long pauses after atrial premature beats, which are frequent triggers for my AF.
I have an appointment in early February to return to the clinic. They are going to look at NCAP (Non Competitive Atrial Pacing) which prevents atrial tachycardias by “avoiding pacing” after a premature atrial contraction, as well as look at APP (Atrial Preference Pacing) which does the opposite, “overdrive paces”, so having both these algorithms switched on at the same time might be ineffective. They will look at other settings too, including Mode Switch.
The consultant confirmed that although I have had hundreds of episodes of Atrial Fibrillation (AF) at high heart rates over the last several months, episodes were generally still of very short duration and so my overall AF burden was still quite low. AF burden = the total time I spend in AF and out of normal sinus rhythm.
He did say however that even though I currently have a low AF burden, I can have an ablation at any time. As my EP got up to dash off for his afternoon clinic, I was reassuringly told that my heart was healthy and strong, and that the chambers were not dilated. If episodes started lasting longer and my % AF burden increased, then he would be more concerned.
I will keep you all updated on my progress. I am very happy to have this opportunity of working with such a senior member of my EP’s team. Who knows, they might just discover another tool in the cupboard to use against AF.
Thank you for all your support. I couldn't believe how well I managed to get my message across. I think I impressed the EP too!
by Good Dog - 2023-01-16 18:42:46
Although you didn't get a a positive resolution to your AF issues, I am happy to know that at least you did get some potentially positive news and information. So what did not start-out as a great day seemed to end fairly well. It always feels good to know that someone is listening and will be in your corner. Especially when that someone is "the expert" and/or highly qualified and experienced. There is a lot of reasons to be optimistic! I am glad you found someone that seems to be a good fit and that they are willing to explore options for you. Having options is always a good thing. That is great news!
Thanks for the upday. Keep them coming!
A Rough Start!
by benedeni - 2023-01-16 18:53:42
Wow. A cold start to a long day for you, Gemita. I know you are very tired but it sounds like most of your news was positive. I am very happy that you were comfortable with your new EP and that he listened to your concerns. It sounds like you have a whole team of very experienced professionals taking care of you now and that is most reassuring. I'm absolutely certain that this EP was most impressed with your knowledge, questions and understanding of your conditions.
We will all be anxious to hear back from you after your upcoming appointments. Stay well.
by new to pace.... - 2023-01-16 19:19:13
I too agree with what both Beni, Good Dog and Benedni said. About what you have accomplished today.
new to pace
by Lavender - 2023-01-16 20:23:33
Cold and tired probably in bed-it's after midnight now in London-may your sleep be peaceful!
How nice that you were still seen even though your morning appointment ended up in the afternoon!
I feel for the EPs who are rushing to help people and for the people who feel the pressure to be seen quickly and still get the message relayed.
I am glad you liked the EP AND he's conservative but also well versed in new ideas to try. I have never heard the term "clinical cardiac scientist" and looked it up. It seems more prevalent in the UK to have those.
It sounds like your EP respected your input and has a plan! How comforting to know that your heart is strong and healthy even though you have lots of A Fib! Good report! Good night!
by Old male - 2023-01-16 21:57:59
Hi Gemita, I am curious to know what symptoms, sensations, limitations, etc. that Afib is causing you to seek this treatment.
As one living with permanent Afib the past 2 years. I have occasional SOB but otherwise manage to live an active life. Sure the medications and activity has helped. Good luck with the new doctors.
by Gemita - 2023-01-17 01:14:42
Beni, thank you for your message. Yes my last EP suggested an AV Node ablation at one time to relieve my symptoms of an irregular rhythm, since I seem to be very intolerant of this. The new EP has gone in the other direction now, not wanting to do too much at all, but I am not disappointed because I am still having some long periods of respite from my AF between increased activity. Perhaps with some pacing changes I can do even better in the future. It is certainly worth a try.
I know what you mean about the shotgun approach. AF being difficult to treat, doesn't always respond well to aggressive procedures which can make things worse.
by Gemita - 2023-01-17 01:16:39
Good Dog, yes I feel quite encouraged with the prospect of experimenting with my pacemaker. What have I got to lose? It has already proved that it can help with my AF by fixing the bradycardia (I clearly had bradycardia induced arrhythmias) and although I am still having symptoms during AF episodes, these are certainly better controlled now than before my pacemaker when my burden of AF was so much higher anyway, with longer lasting episodes in general (more than 12+ hours). Without a pacemaker, perhaps I might have gone into persistent AF by now.
by Gemita - 2023-01-17 01:23:04
Benedeni, yes I feared when I saw the waiting room so full that I would have to be seen by another doctor, so I was glad when the consultant finally called my name. The nurses kept asking if I had been seen. It was unfortunate that he was so pushed for time and I picked up on this and felt a bit uncomfortable. I don’t think he had time to read my notes thoroughly either otherwise he would have kept me waiting even longer. Never mind the outcome was favourable and I feel as though I am moving forward again and the journey back home was a lot easier!
New to Pace
by Gemita - 2023-01-17 01:26:03
New to Pace, thank you for all your messages. I took your advice and had an early night before my appointment and it certainly helped me to stay focused throughout my consultation yesterday. I don’t think I would have come away from my appointment feeling quite so happy with the outcome if I had been tired. When I shook hands with the new consultant I asked if he had had any lunch, I was so concerned about him. He responded, “oh don’t worry about me, now tell me how you have been”, so it was a lovely warm start.
by Gemita - 2023-01-17 01:40:40
Lavender, I got to bed early last night, but I have woken early too with cramp in my toes. Thank you for your lovely message. He was such a lovely consultant, especially having to put up with me. I actually recorded some of the appointment (the technical stuff), with his permission and I can see despite my resolve to “listen” more, I ended up doing a lot of the talking. But I am glad I have got it on record though, to remind me to hold back in the future.
Yes most of our pacemaker technicians are highly skilled to assist our EPs. They often make changes without consulting the main consultant. My Rate Response was initially switched on without my consultant's prior approval. I am going to learn a lot from a Clinical Cardiac Scientist.
by Gemita - 2023-01-17 01:47:46
Old Male, you are very fortunate not to feel your AF, but perhaps this is because your heart is not going in and out of rhythm? I really don’t know why some of us are symptomatic and others not?
Symptoms? I have AF which often starts with a rapid ventricular response rate, although my beta blocker controls this well now. When I slide out of normal sinus rhythm and go into AF I feel the quivering, irregular heart beats immediately and then I may almost as rapidly return to a normal sinus rhythm, before going back into AF. I can experience symptoms like generalised weakness affecting my ability to exercise, quite significant chest pain if episodes are prolonged, feeling faint and unsteady, SOB, uncomfortable palpitations. When I am in AF, fatigue is often present too and can linger long after episodes. Also during AF, urinary frequency can be a real problem especially at night due to natriuretic peptide hormone being secreted from cardiac atria during high atrial rates. This apparently helps reduce water and sodium in the body to reduce blood pressure.
What needs to be remembered is that while a pacemaker keeps our heart rate above our lower limit, it does nothing to help with the sudden changes in rhythm or speed associated with AF. Also with its many functions to protect the ventricles from atrial high heart rates, the pacemaker is programmed to switch pacing modes rapidly to avoid tracking these, and this switching can also cause symptoms. It is perhaps the stopping and starting nature of my episodes which cause the difficult symptoms, since strangely when I suffer longer episodes of AF, after a while I usually get used to them and manage to continue with my daily activities.
Perhaps though you enjoy permanent AF at a normal or slow speed and that is why you don't have many symptoms? My husband has slow AF and doesn't feel it although his capacity to exercise is impaired
Thank you, Gemita
by Daedalus - 2023-01-17 02:09:24
Gemita..... thanks for your wonderful update. I learned a lot from it, and was glad for your clear explanation of "afib burden." Having just completed my first year with AF and pacemaker, I have much to learn and every little bit helps. And I note that despite all of us learning, there is still so much to research and understand. Sigh.
Anyway, glad for you that yesterday is over and you have a positive grasp on your next steps. Do keep us informed, please. Oh, and good move recording the session! 👍🏽
by Penguin - 2023-01-17 04:30:43
Sounds like you got your message across really well AND achieved further help of the kind that you wanted. Well done! In those busy circumstances that's quite an achievement.
Good news also that the episodes are of short duration and the pacemaker is terminating them. It doesn't stop the symptoms though! Hopefully the programming to reduce the 'drop' in rate will help. '
Working with a Scientist / EP' sounds encouraging. Persisting until you get it right would be ideal particularly given current NHS workloads.
by Aberdeen - 2023-01-17 08:59:55
You had a long,cold start to your day and a long wait. It seems to be very fruitful as you have an appointment in February which looks like giving you a solution to your AF.
I didn't fully realise all your symptoms regarding AF - thank you for your explanation!
Good luck and we will look forward to hearing how you get on in February.
by Flo - 2023-01-17 14:20:05
Gemita, thank you for the update and I am glad you like your new EP. He sounds like an EP I would like to have. Your post and the comments following are so interesting and informative to me. The mode switching is of particular interest to me. Best to you for your Febuary appointment.
by Dixie Chick 65 - 2023-01-17 14:27:14
Gemita, it sounds like you are on a good path forward with your new EP. I'll see my device rep ( first time in over a year ) next week as well as my doctor. Even though I've had no problems, that I'm aware of, it's always a stressful time for me.
All the best to you !
Thank you my friends
by Gemita - 2023-01-17 18:04:24
Daedalus, Penguin, Aberdeen, Flo and Dixie Chick 65, how nice to hear from you all and I am so glad you approve of my update. Are we beginning to sound like professionals? I think so. Hubby has just reminded me that we are coming up to our 5th anniversary (March and May 2023) with our pacemakers. I still cannot quite believe it and I hope we can get a few more years out of our batteries.
Good luck Dixie Chick 65 for your check up next week. Always a concerning time I know but if you are relatively symptom free, you can relax I am sure. Please pop in more frequently. We have missed you.
Flo, I will learn more about mode switch and share it with you in the future. It is an essential setting for us arrhythmia sufferers, isn’t it.
Aberdeen, are you staying warm up there? It is freezing down here too. Yes AF is a horrible condition but it can be controlled. I have been lucky with the state of the NHS to have been referred to the Electrophysiology Clinic at the hospital. I know how busy they are.
Penguin, yes I hope the Scientist/EP will be patient and prepared to try out a few different settings (one at a time hopefully) so that I will know what has worked. I must keep a record of the original settings and what they are changed to. I hope you are able to get your settings adjusted for you too
Daedalus, I will certainly keep posting updates especially if the treatment works! It is a learning process for us all but it will be an exciting challenge if we can get our pacemakers to do more for us.
by athena123 - 2023-01-17 19:22:39
sounds like you have a doctor that you can feel comfortable with and solutions to follow. best of luck Gemita and to your husband as well.
by Marybird - 2023-01-19 12:40:13
Hi Gemita, Sounds as though you had quite a time getting to your appointment, but get there you did and it was well worth the effort. I have no doubt your EP was impressed with your knowledge and how well prepared you were for the visit, and much was accomplished despite the brevity of tne visit.
It sounds as though exploring and adjusting your PM settings to hopefully control or mitigate your AF is a good move, I know I'd prefer that to upping or changing medications, or ablations if PM adjustments were among the options. I think a visit or two or three ( especially coming up soon) with the clinical cardiologist electrophysiologist will not only help mitigate your AF, you will also learn a lot about PM settings and their effects on the heart.
It's got to be a relief to know that while your AF incidents make you feel lousy and while you have them you think they will go on forever, your actual AF burden is low and your heart is healthy overall.
Keep the faith and keep up the good work, and my best to your husband. I will PM you later. Mary
Athena and Marybird
by Gemita - 2023-01-20 07:03:26
Thank you both for your support. I feel like a child again, about to embark on a journey of discovery. We keep reading about members having their settings tweaked to suit their lifestyle, why not try to tweak our settings to suit our arrhythmias? It is worth a try and hopefully it will help move pacing forward to a time when a simple pacemaker, without a defibrillator, will be able to do more to help arrhythmia sufferers. I will be working hard to make this happen.
New team for you!
by islandgirl - 2023-01-20 10:34:10
I am so glad you had a good, and long day, with your new doctors. I am glad they are referring you to an EP.
Looking forward to updates!
You know you're wired when...
You have a dymo-powered bike.
I feel so incredibly thankful that I can continue to live my life.
Re: Appointment today.....
by Beni - 2023-01-16 18:15:50
I am very happy to hear you feel that your EP heard your concerns. Just getting them to listen, really listen, is (more) than half the battle.
Your day sounds like it was tiring. Travel is tiring and to experience delays, etc. adds to your stress. Nonetheless, it sounds like it was successful.
The fact that he sounds cautious in his approach to treatment, in my opinion, iis not a bad thing. My last cardiologist liked the shotgun approach. The "throw everything at it and see what sticks" style I found grueling, to say the least. After awhile, I found it too difficult. I lost confidence in him and asked my GP to find me someone else. It was a good choice for me. My current cardiologist is much more measured and cautious. I no longer feel like I am in a science experiment 😳.
.I hope you get some answers soon. Yours has been a long journey.