Hi lovely people, I promised I’d get back to you after seeing a cardiologist/electrophysiologist privately. As you might guess from the title, this is what he believes will solve my problem. I will still be in persistent Afib, but won’t feel it. In the meantime he has doubled my digoxin dose and I will be repeating the 24 hour ECG monitoring and the Echocardiogram at a different hospital where he practices. The ablation and pacemaker procedure has a long waiting list. He mentioned 2 years, 🙄 That would make me 76, possibly 77 years old!
Ive taken the extra digoxin today and haven’t noticed any improvement or otherwise, but it may take a while to have an effect. I have decided to transfer my care to him and to travel further to his hospital which has better facilities than my local one. So now I just wait for appointments and cancel the one I already have at the local hospital.
I am very concerned about having the procedure he recommends. In effect I understand the ablation destroys the AC Node which is involved in transferring the chaotic electrical impulses from the Atria to the Ventricles. Then a pacemaker regulates the ventricle action instead. Does anyone have experience of this? Seems I have plenty of time to think about it! 🤔
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SashaPooch
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Sasha, Yes I had this same procedure AV Ablation beginning in January 2023, as I also been diagnosed with BrackyTacky. I had my pacemaker implanted in my chest in January, I remained on blood pressure medication, 12.5 mg of metoprolo afterwards and of course blood thinner. I had a stable and normal blood pressure and heartbeat in March when I was scheduled and underwent the AV ablation. I had the"NO TURNING BACK PROCEDURE" without complication. went home the same day. I remained on Blood Pressure medication and Blood Thinner. As of July 10, 2023, I was feeling fine, but suddenly my DIA mmHg blood pressure reading dropped to the low and mid 40's. I contacted my doctor after 3 days of no improvement and he told me to stop my blood pressure medication, drink more water, and continue to monitor a few times a day. It took about 5 days, but my blood pressure DIA reading returned to the low and mid 60s, where it stands now on August 17 and my blood pressure is quite normal again.
You should know you cannot correct or re-do an AV Ablation, The pace maker will control the rest of your life. Without it ... no need to say more, it is why they call the procedure "NO TURNING BACK" Since I am living with this now and my blood pressure has returned to normal, I mostly fell quite normal now. I do experience occassional shortness of breath and fatigue if I over do it, but otherwise life is normal and no erratic heartbeats are felt, even though they continue. They first set your heart beat at 80 BPM, about 30 days later they lower it 70 BPM and the third and last adjustment is 30 or more days down to 60. You may feel a short time the difference, but soon it corrects to new new beats per minute.
My suggestion is you make a list of many questions, look up all the answers you can find on google or elsewhere and when satisfied, ask those same questions to your cardiologist for reassurance. Would I do it again, I believe I would, but unfortuantly, I can't say, however, if I can answer your question 5-10 years from now when I'm well in my 80's, I would have say, yes, but that is yet to be determined! Best of luck, I wish you well.
Thank you for your reply and advice. I will do as you say. I’m hoping the extra digoxin I’ve just started taking will quiet my heartbeat to a tolerable level and allow me to function. This ‘no going back’ procedure I find terrifying.
If the pacemaker stopped working your heart (our bodies are so cleverly designed!) has a back up system. Your heart would beat very very slowly but not stop so there would be time to fix the problem.
Isn’t that amazing? Not only that, but at least with my pacemaker, I have not to, but even an extra line that they could connect if necessary. If my first line fails, I have a switch inside that will flip right over if all goes to plan. I always say that because as I told my doctor, I’ve had many vacuum cleaners stop working, so I don’t trust anything electrical or mechanical lol he said I’m right the third line is in they are not connected, but because I have HIS pace bundling it is part of the package. I had one issue my first month where I swore I was feeling like an echo. It turned out the back up switch was on and that’s what was causing it. It’s not harmful but it sure was annoying and a little scary until I knew what it was. That is the point of my tech testing at each month. She picked up on it called the engineer and they told her what to do. Nothing like being the bionic old lady lol.
Listen to your doctor. If you have faith in him, you are going to be fine. Whenever I am with mine or any of his team, as I mentioned to someone here before, I felt swaddled in safety. I could relax, not afraid of what my heart was doing. In this case, we truly are putting our life and someone’s hands.
I am on Metropolol ER succrate 50 and my anticoagulant. Yes make sure you take it the same time every day. It is very rare that you were going to fill much except may be in the beginning as they readjust your pacemaker. For some reason the final drop to 60 I felt more for about a day then again I had ice cream on the way home lol. Just remember the harmful part is blocked off. Why would you want a piece of your body that is doing nothing but causing you trouble? Don’t be afraid when people tell you it’s permanent that’s a good thing unless there’s some thing that no one can for see right now I’m looking forward to not having any more procedures. In the last 2+ years I had about nine total not with my current doctor. FYI he does not take those things lately and will not keep repeating feeling procedures.
You will have questions for your Doctor No doubt. I hope he is like my doctor because he gave me answers to my questions before I got to ask him lol I knew I was in good hands. I have no regrets.
My husband had this done in 2017 at some point it must have stopped working as he recently had a stroke due to AF we don’t know for how long the op had stopped working , He wasn’t put on blood thinners after the operation . So I would check that you will be put on thinners after the op as a prevention measure . I’m not saying this to worry you but wouldn’t want what happened to my husband , to someone else .
Hi Jackie, I’m so sorry to hear what happened to your husband. Thank you for your concern. I’m already taking Apixaban and the doctor said that would continue. As always there are no guarantees though.
Hi Jackie, an AV node ablation can’t ‘stop working’. That’s the point of it. But I don’t think it prevents stroke, for that you need another procedure.
Well the ablation was to stop his AF which obviously came back . When he was admitted to the John Radcliffe Hospital his heart was beating very fast and up and down, before the ablation and he couldn’t feel any palpitations or anything even when recently it was 160 he couldn’t feel it , he just knew he didn’t feel right .the surgeon in 2017 said he could see it react as soon as he touched something not sure what , when he was operating, Hubby didn’t know it had stopped working because he couldn’t feel that his AF had come back . This caused the stroke as it hs pooled in his heart and sent the clot up to his brain . The consultant told us last week he didn’t want him to have another ablation as they are normally only temporary as we discovered . Had we known at the time we d have taken the meds route because at least he would have stayed in the system . This is only our story so can’t compare to others.Hope this makes sense .Regards
Yes it does, but looks as though he had a ‘normal’ ablation, not AV node. Sad that he had a stroke but many people (me for one) feel that it was worth having an ablation even though mine only lasted two years before AF returned. Unfortunately it seems that staying on meds instead of ablation doesn’t always keep you in the system as you are discharged as soon as ‘they’ think they’ve done what they can.
Yes , we won’t rule out ablation if another consultant suggests it . He s been referred to arrhythmia clinic so it’s a six week wait i think , so we’ll see what they say then.
Jackie, I am so sorry to hear that about your husband. Yes I have been told I will be on anticoagulants for life and I have no problem with that. For the most part, I do not bruise terribly, unless I really injured myself or I have a vampire taking my blood at the doctors lol in the beginning, I think I seem to bruise, much more and very much at the time.
Thank you for the update! It’s good that you have sought further advice from an EP.
There are a lot of people on here who have found this procedure very successful. Your atria will still be fibrillating, and you will need to continue anticoagulants, but your actual heart rate should settle and be set by the pacemaker.
I’m interested in that it’s the only option open to me if the rate control stops working - though I’m ok for now.
Yes, you will be dependent on the pacemaker, but I believe that they are checked remotely, and problems flagged up. Even if it were to stop working, you usually have an ‘escape rhythm’. It would mean a very low heart rate, but would get you by until you get seen at hospital. Yet apparently they’re extremely unlikely to stop working!
If you search ‘pace and ablate’ using the search box, then restrict it to your own forums, there should be lots of posts about it.
I don’t know if they are all the same but I actually have an app and I am monitored 24 seven it’s on Bluetooth on my phone. If something doesn’t seem right, they can do a transmission wherever I am. It takes about 15 minutes or so you have to keep your app running in the background on your phone, and obviously your phone must be working some people have something at home instead. It’s just amazing if I open the app right now, it will tell me the last time that I transmit it to them the other transmission is deeper with the possibility you have got an issue going on , usually they will contact you first and definitely your doctor
Thank you as I just mentioned to Joy, I’ve been a bit under the weather among some other stuff, but not because of my heart. Four months since the pacemaker and I have to say overall it’s amazing how good I feel. Everyone knows we have bumps in the road, but we also need to remember we can be affected by things other than our hearts. We seem to blame everything on that ones we get a fib I think it’s also been a bit busy at home with four litters of kittens. We adopted a feral group of cats right now. The girls and the babies are inside until we can afford to get them all fixed that’s quite the undertaking at $250 US per cat. Sadly the boys have to be outside for birth control. It has been frightening here. It was a pack of dogs that killed two tiny babies and their daddy. Also did a number on me. Less than two weeks I have a friend coming to live with us. Just when I feel sorry for myself with a fib etc. now I look at him and I am thankful. He is 57 and has ALS. I pray the doctors are wrong because he has already had it almost 3 years they told him he might live five, but he still is trying to be strong. He is not afraid of dying. He is afraid of living when it finally takes over. That is why he is coming here with us. He will not be alone and his wishes will be followed. Whatever he wants. Life can be so hard but you look around and you realize just how lucky you can be sometimes. Everyone is telling me how hard this will be for me. Never mind me how about for my friend Daniel? All I have to do is love him. He is like a baby brother to me.
I hope this finds you doing well. It makes me feel good I didn’t think anyone would miss me. I always have to add my two cents lol it’s just who I am. I didn’t want the person looking at getting a pacemaker and AV node ablated to believe that they will not feel anything after it. I was confused, and it scared the heck out of me. I don’t want anyone to feel like that. The difference with the pacemaker, as we know if we have a good doctor, that explains, it can no longer affect the heart because it’s locked up behind the AV node. Yeah that’s how I picture it and my pacemaker is in charge not a fib.
what can I say? I am an only child with a big imagination still at my age lol.
I had Rapid, Persistent AF H/R. With Stroke and on Day 4 discovered a clear pathway of carotid arteries but Ca Thyroid - Papuillary.
I finally in December 2021 and 2 years after stroke, I became controlled by the introduction of CCB Calcium Channel Blocker AM Diltiazem 120mg (less than 1/2 dose). And BB PM Bisoprolol 2.5.
CCB for H/R
BB for BP
I never feel the rapid H/R and now it has settled down to 60s day but always 47 avge at night over 24-hr monitor. Whatever the meds. H/R went from 186 on Metoprolol to 156 on Bisoprolol and now from 88-96 to a year later 60s day at rest.
As I stand back from Ablation as I have an enlarged back chamber, I see that some just have a pacemaker and others that have ablate and pace seem to have too low BP or H/R it is confusing.
Low is more dangerous than high as it can be controlled.
What is AF - just an irregular heart beat caused by - in my case from Thyroid problem. Now Ca out I would think it would return but it's still with me.
My symptoms were SWEATING PROFUSELY. NO ENERGY. Metoprolol Breathless and fatigued. Also pauses at night.
So I am now 74.1/2 and happy to listen and help others without cardioversion, ablation or risky anti rhythmic drugs which I can't have either.
Awaiting my heart to do the decent thing and revert itself!
Take care, scarring to me sounds barbaric there will be better ways.
It's up to you.
My profile is now. 120=124/69. 60s Avg DAY at rest. 47 Avg. NIGHT no pauses.
No sweating. On Synthyroid for thyroid keeping TSH 1.0-2.0 surgeon's orders. 125mg daily. 3 clear Neck Scans. Like is good.
Joy I am so glad that you are doing well. I had no further options except to repeat Band-Aid approaches short term. I’m so sorry about the stroke. As you pointed out the things that had been done it just shows how everyone is so different when it comes to this a fib is not one size fits all. My cardioversion failed the second time with three attempts again my doctor won’t repeat failures. I already had too much scarring From other doctors. If you have a great doctor, you trust he should try to do what’s right for you. My doctor point-blank said your heart and you have had enough. Let’s fix this. I just had my fourth month since my pacemaker fitting and AV node. Never what I have believed I could feel that’s good. Oh I’m still tired there are other things but I am also 71 even though in my mind, I am 35 ha ha I’m guessing some of what I feel is just due to getting older. My stamina also needs to be rebuilt because I have not been able to walk for over a year. We need to remember not. Everything can be blamed on a fib. Think about if you go to the gym all the time and then you get sick and miss a few weeks. Wow I remember how hard it was to start again so once we are fixed, not cured, but fixed we have to rebuild what we had lost
D get your levels of B12 and Folic because research are saying we should be at a higher level. I'm now at 700. I take 1000ug sublingual Gold Top Solgar x 3 days 1 nugget per week.
Then ad now there is no B12 Solgar so I ordered it at Naturitas NZ and they got it from Switzerland! I ordered 2 bottles 100s.
It's got bad here even Drs couldn't get the B12 injections.
As I am B12 deficient I need to replenish it.
I like my 60s H/R on rest. Walking further is so much improved.
Sad about all the fires ..my favourite island Maui. I remember arriving with my new bike on board and I rode on the bike to the bottom of island with alot of whisles and hoots from others.
I visited the Baha'i there I think a gated community in the place which got the hit.
Fire is so unpredictable.
Glad you are with us again. Someone was asking about pace and ablate or the other way round.
Its cold nights here as we arrive at spring on 1st September.
I have a right shoulder repair keyhole on 30 October - wish me luck Dawn.
I have been under the weather for awhile while they tried to find a med fit for another condition. I have been going through withdrawal . It’s horrible. Foolish dr did it wrong changing it. I am finally beginning to feel a bit better. Yes I saw the question right now, so had to put my nose in it. Lol
yes fire is frightening we have serious warnings we have had almost a month of temperatures around 110 Fahrenheit. I am surrounded by trees and you know it only takes one foolish person to destroy life.
This is hard on everyone especially the poor animals out there we provide water and food. There is some shelter, but nothing to help the heat. We have a huge fan but it’s just blowing hot air.
Please drop me a line and let me know how you do with your surgery. Big hugs, so nice to see your reply 🤗
I had pace and ablate 8 years ago. Was the best thing I did for myself. Had a ‘box change’ as they call it a year ago. I know I have permanent Afib but can’t feel it and can more or less do everything I used to do years ago - no more being rushed into hospital!!
Hi Eastwick, thank you for your reply. Your experience sounds very positive. Do you find having a pacemaker restricts travel or use of appliances? How did you know you needed a ‘box change?’
So far I have not been rushed into hospital for any reason apart from my initial diagnosis when the GP urged me to go to A and E. I just wandered in by myself in that instance. I’m in persistent Afib and feel it all the time. I hate taking the meds which do nothing for the chaotic pulsing I feel in my chest, behind my eyes etc. The pace and ablate would solve this I know, but it sounds so radical and intrusive and restrictive. You seem to be happy with your decision which is good to know. Many thanks
I knew I needed a new pacemaker because the hospital checks it regularly and they told me when the battery was getting low. It gives you lots of time, so no panic. I have to admit that the first time I hit a golf ball off the tee after my operation I was really worried that one of the leads would come out!! We travel a lot and I have no problem but at the airport you can only go through one type of scanner. Never found it a problem, the universal sign for a pacemaker just seems to be holding your hand on your heart and often I have to be patted down - luckily there always seems to be a female to do it. (In case it didn’t show I am female).
Once again, I am going to speak up. You feel it restrictive and intrusive having it done. Don’t you think a fib is intrusive and restrictive? I had no life I wasn’t sure I wanted one anymore. I was so sick unable to walk and even sit and enjoy watching TV. I was miserable all the time. Think of the endgame when you wake up after it’s over. Oh yes, you will be achy and sore a few days and it’s going to feel like you have an elephant on your chest when it’s really about the size of a silver dollar. If that, lol the hardest thing for me was not using my left hand and arm, and I’m not a lefty, but I obviously use it more than I thought. They actually gave me a sling. The few restrictions you will have are not that bad it’s just bad habits we have.
I wish you could get it done now instead of having to think about it. It’s not scary you’re going to be fine. They do so many of these now. No one knows what the future will hold for any of us, but you will see the majority of us with a pacemaker have no regrets. We are living much better now. Nothing makes me happier than when my dog barks that he needs to go out. To be able to get up and go with him just makes me because this time last year I could barely shuffle to get to the bathroom. Quality of life that’s what you need.
My instructions are 6 inches away, including the phone. The hardest thing for me is when I would get off the phone and set it on my chest if I was on the bed lol not recommended. The majority of appliances will not affect you unless you put them on your chest. Lol so keep the metal detector off your chest.🤡 there are people in certain jobs that probably have problems with things but even going through a metal detector is no longer a big deal just keep moving and at the airport if they use the handheld on, you make sure they don’t keep it over your pacemaker area. I got a card immediately after my surgery that I can present. Not to be insulting, but you know how some security people can be, and it won’t register to them what you’re talking about when you say peacemaker. The card is a good thing to have. I figure I always have my little scar if I need it lol to prove anything. The crazy things are not that much compared to hopefully how wonderful you are going to feel. That is especially true once you can relax. About everything. In the beginning, I drove my nurse crazy. I was aware of everything but that’s OK that’s how we learn what’s going on and what is serious and what is not
I am so sorry it could be up to two years. That is the bad news. The rest of it if you could feel like I feel you would do a dance. They will fit your pacemaker. The ablation is the second part for me. It was two weeks later. It’s all the best you could do for yourself. Do not think of the AV node as your friend
it is what makes you feel so badly. It is telling your heart to do things. It should not think of it like that instead. Once the node is ablated your smart pacemaker will make you feel so much better, because it totally ignores the bad things that got through the AV node before. You will feel palpitations, etc. Especially, in the beginning but they are not able to mess your heart up anymore. It does not take long believe it or not for your heart to start recovering and feeling better. It’s hard in the beginning not to think about your heart all the time it has taken me about five months. I am into my sex now, and realize how human I feel again. If it does a little flip here and there, it’s not a big deal I still notice but not like I used to because it’s not hurting me
a few weeks ago, I went to my follow up with my EP which I do monthly. He was over the moon I had had an echo/electrocardiogram/nuclear stress test and I’m not sure what else lol he said any doctor would love to get the results he has in his hands right now. Anything else I’m feeling, including fatigue he believes is coming from elsewhere. I am going to be getting my stomach checked. FYI he is right. Also, stress can really do something to you. He is watching me for that.
I sat down with my AP after my last failed cardioversion. He had answers for me before I had questions for him I knew I was with the right person. I never looked back. My ejection rate is 76% now. FYI I have heart failure, and he hoped it could turn around, normal is in the 50s FYI so I am better than normal according to him. I don’t understand 100% about the ejection rate. All I know is if he’s happy I’m happy.
I am not a doctor, but I listen to him if you feel anything like I did, I would run not walk and put myself on a list for that ablation and pacemaker and just remember this is not your typical ablation as you have been explained, but you’re not gonna miss that thing.
Hi Dawn, thank you for your reply. I’m really pleased you have found a solution to your Afib. I wish I could trust my doctors as you do. I have huge trust issues because of previous misdiagnosis. As a result I always feel I need to have control. The long waiting time gives me a chance to get my head round this ‘no turning back’ procedure or not. I never imagined this pace and ablate solution would be on offer, so I have a lot to learn about it. Many thanks for sharing your experience.
Sasha, a year ago, April I had a very aggressive procedure that went through every one of my major arteries. The doctor is supposed to be a rockstar. All I will say right now is his far from that. He also abandoned me with a heart rate in the 150s until I finally got a new doctor eight months later. Because of the tachycardia, I also have heart failure and yes, it was blamed on that I could not get a call back nothing of course it was more to it, but doctors are supposed to do no harm. I had just moved to Texas, so I did not have my regular doctors although this one in the hospital he represents are somewhat famous that goes to show things can still go wrong. I was bad when I went in, but I kept going further downhill so I can tell you straight out. I had no trust for anyone which is why I didn’t know where to go or what to do. I was also in such a deep depression. I could not help myself. It was my mail carrier. Who told me about a Cardiologist nearby instead of going to Houston. Long story short I saw him. Four days later I had a cardioversion, and it worked only 3 1/2 weeks, but it was heaven and it showed me how I could feel. I had gone in in a wheelchair and I walked out. When it failed, I was referred to my EP the man on a pedestal now lol I make him crazy when I say that he is so humble. He did a second cardioversion. It did not work at all and he had to tell me it failed. When I woke up we had planned on trying a drug regime then everything was canceled because they could not do anything with my rhythm. When I woke, and he told me I cried. He took my hand, and he said we’ve got this. I made a list and I was very anti-pacemaker. As I mentioned previously, he answered my list before I read it that’s when I knew he was the doctor for me. He thinks outside of the box, and he does not put us at a certain age on a list and will only do certain things as if we are not worth the effort some doctors will do that you know, and they will keep repeating procedures, because they are money makers.
I know people who have had more than a dozen cardioversions or ablations. If I am scarred after three, imagine with their heart looks like.
if they called and said come in now, we need to do it again I would be there and I don’t take this lightly
not all doctors are created equal as you and I know, but as I read your comments about yours, I warmed up to him. Be aware if he is not warm and fuzzy that’s OK. Those kind of doctors usually are not. Lol. Surgeons are a different type and a PE is amazing. He’s not just a surgeon and a doctor. He is an IT tech with the equipment they use. My pacemaker is one of a kind. They did not have one for me. I should clarify it is not the pacemaker device, but the wiring in me. It is a new technique. In fact, my doctor presented my case in Dallas and they requested he come up there to teach EPS in Dallas. I have only found two people on here with a device like mine but the wiring is custom. Did I take a leap of faith? Yes I did, but I didn’t have to even think about it because of the way I was feeling. There is no cure the only other things to look forward to a repeat of what you’ve already had done or trying meds.
No one can tell you what’s right to do. You need to question the way you’re feeling now and you’ll probably worsen, is that the way you want to live I would put myself on that list and pray that it moves faster. But that’s me.
Hi Dawn, you really have been through the mill several times by the sound of it. You’ve had a very difficult road to travel. I’m in England so have a very different healthcare system from your own. However with my latest appointment I have stepped into the private sector and have consulted with a doctor who actually does these procedures, so I am more inclined to respect his knowledge and expertise. There seems to be very little communication between health care professionals here, so I’ve found I have to liaise between them, 🙄 Now I understand some of the doctors are going on strike and operations are being cancelled. What a sad state we are in! Meanwhile, I’ll see how I go and learn as much as I can. Many thanks for sharing your experiences with me. All the best, xx
Hon I have not been through more than so many on here. In fact, I have been blessed. Yes, I am aware of your healthcare system when they try to talk about similar here, none of us are interested. I’m hoping the private sector doctor is the one talking to you about all of this. As I said, I liked the sound of whoever did I cannot imagine doctors on strike. The longest I have had to wait is about a month for an appointment and that is my choice. I could get myself into the car right now and go up to the emergency room and could have when I injured myself. My 80 pound dog stepped on my wrist and hand. I thought it was just bruised but now it appears it may be something more. I am waiting because I like the doctor I am choosing. We have some awful ones like everywhere else but thankfully I can do my homework and find one like you apparently did now. I know how expensive that must be. The downside here is the cost of healthcare overall. My first two ablations were $250,000 each just the hospital because that’s all I saw for a bill. My insurance paid it. Trust me they did not pay that amount, but it still did not come cheap I know. The good part is I didn’t have to pay it or I would not be here any longer. It shouldn’t be that hard or that expensive for us and sadly here in the states I feel that once we retire, we are pretty much written off is not that important. Healthcare has become a money maker. I adore my doctor, because he will not to look everything over and over again just to make money.
Sending you healing thoughts and I hope that you get answers that will make you comfortable enough to go forward. You really need to because this does not get better. For most of us.
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