pace and ablate

[Hardjuice]

hi good people

I was due to have pace and ablate before Christmas but I postponed it

Super hard decision to make I saw my consultant a few weeks back and my heart rate on the ECG was 126

He told me the drugs are no longer working and he offered me pace and ablate again

We have probably spoke about pace and ablate as a solution for a few years

I’ve had my pre assessment done and was due to have the pacemaker yesterday but it’s been moved to the 28 th next Friday

At pre assessment my heart rate was 123 bpm

Blood pressure 175/105

I take my blood pressure at home often and the day before it was 133/85

So I know I have bad white coat syndrome

Even heart rate lowers as I leave the hospital

Weird

I hate drugs and medical interventions but understand their role in saving lives

Apart from swollen legs mainly due to dyltizen

I’m pretty good

If I take water tablets as required the legs come down some

Still not 100% sure this is right for me

Family think I should do it just to get off drugs

the AV node ablation is irreversible is the words I struggle with

I guess as we age bits will fall off

Watch this space

[sassy59]

Wishing you well whatever you decide. Good luck to you.

[mjames1]

Have you had or been offered a catheter ablation? How about a hybrid or mini maze, both of which can work where catheter ablations don't.

Jim

[Hardjuice in reply to mjames1]

no none of those

Had two cardio versions got back into NSR

But dropped out a few days later

[mjames1 in reply to Hardjuice]

Again, not familiar with your situation, but pace and ablate is usually reserved only when other treatments fail, or are contraindicated for some reason. Have they tried daily anti-arrythmics? What about a catheter ablation? If afib is too persistent for catheter ablation, what about a mini maze or hybrid procedure? I would have these questions answered before having my AV node ablated, because once that is done, you cannot go back. A second or even third opinion may also be warranted. Remember, even though it doesn't seem that way, doctors work for you, not the other way around.

Jim

[BobD Volunteer]

For many people it is a life changer.

[mjames1 in reply to BobD]

Yes, but that was not your first line treatment for afib. You had several ablations, which if I remember correctly, served you well for a number of years. The OP's situation may be quite different.

Jim

[DawnTX in reply to BobD]

Bob your story, and others gave me the courage, as well as the fact that my doctor answered my questions I had listed before I got to ask him. Less than two months oh what a difference. My activity level which before was zero and everything else. I never thought I could feel this way again. Sometimes it’s like walking in a dream doing the things I could do before and then I couldn’t.

I think I’m happy, having a pacemaker instead of any of the mazes, because I think of them like other ablations. None of mine lasted more than a year mummy Luv is the only one I really know of that has had a great one but she is young. Too many variables to make a call on anything like this for anyone else. It depends what you want. My doctor told me my heart and I had had enough I had just started heart failure. Mentally and physically I no longer wanted to go on the way I was and even though you and others made a peacemaker sound great that’s not even all of it. It is beyond that. I am so happy.

[jeanjeannie50]

I'm just wondering what tablets you've tried to get your heart rate down?

Jean

[Hardjuice in reply to jeanjeannie50]

diltzem and digoxin

[jeanjeannie50]

You've never tried Flecainide, beta blockers or both together? I'm guessing you are on an anticoagulant?

Like you I wouldn't want to be jumping in to having a pace and ablate too quickly.

Would it be an idea to get a second opinion asap in a different hospital?

Jean

[Hardjuice in reply to jeanjeannie50]

not jumping in in truth this option has been on the table for a few years now having used a drug regime open to me for years

( I’m asthmatic)

Heart rate was acceptable at around a 100 at rest

But recently it has been higher when I’ve had my review

I feel good mostly , so apart from swollen legs

I feel are caused by dlytizem I’m ok

I’m 68 still work in the building trade

I’m fairly good mostly

So pace and ablate gets me off drugs

My leg swelling should come down not guaranteed I’m told

I’ll have a regular heart beat so I guess that helps my body in general

But to have a mechanical device fitted I don’t

Need and burn my AV nerve I can’t live without to create a mechanical heart situation seems hard to accept

Although a lot of people have said it’s been great for them pace and ablate

It’s a tough choice but I’m becoming acceptant of it

[DawnTX in reply to Hardjuice]

I already wrote once, but just remember what they are ablating is not working right for you. Just say if you ever had a problem. You do not just die. FYI and depending on what you get per pacemaker, I only know mine. I have a back up switch, especially because you are working would be so nice for you not dealing with drugs and side effects and all the other garbage that goes with the pills. I will remain on blood thinners the rest of my life, unless some thing else new comes along, I am still on Metropolol. It’s been less than two months since the pace and ablate. I also have a few other things that need to be tweaked I will know more after Monday when I get an echo but at my first check up my doctor is beyond thrilled with my EKG at Cetera

just remember everything else is nothing but a Band-Aid that is going to fall off. I have had many more drugs than you almost everything, and they have all failed some quicker than others. Digoxin was my last one. It was terrific for the first two weeks. Then it failed. I had been living with a heart rate in the 150s for over eight months I had a cardioversion that lasted 3 1/2 weeks they try to second time and it completely failed with three shocks. My EP put me on the digoxin for a month it failed twice within the month each time it had been doubled. I was going for a second opinion, but my Doctor Who speaks to me not at me, answered all of my questions I had written down, even though I had not asked him any yet. I knew he was the one for me. Quality of life is what he wants for us regardless of our age. I am 70. I had no quality of life. Yes he could keep trying things and they would keep failing. Most likely I don’t want that and neither did he want that for me I had just started heart failure that is what happens when your heart rate stays high for eight months at least for me. 100 is not really acceptable I don’t care who tells you that it’s the beginning of tachycardia, the harder you’re heart beats the more worn out are you getting and the less oxygen you are getting in your body. FYI, I have feeling back from my toes to my calf. I had been numb and unable to walk. The throbbing pain in my arms to the tip of my fingers is gone so many other things gone or improved.

I’m glad you are at least thinking about it. We are all different. What works for you? You know how you feel and how long you have felt this way and you should know what you want for the future. My toes are pink again. I can take my dog out and walk the acre of land. We have just since the end of February, I consider these things amazing

Whatever you decide I wish you the best. I wish a doctor offered me the pacemaker before all the procedures and medication’s. That made me feel so lousy. My first to ablations made me feel ok. After that it was all downhill. I’m not being dramatic when I tell you when the cardioversion failed because of how I was feeling death would’ve been nice if not for my doctor that’s what I would be waiting for now.

[Barb1 in reply to Hardjuice]

Have you been told that you will come off all drugs because many people dont.

[Hardjuice in reply to Barb1]

I believe that’s the logic in doing it

Guess I’ll be left with an anticoagulant

[Barb1 in reply to Hardjuice]

I am still on an anticoagulant and diuretic. It took 18 mths to wean myself of the beta blockers

[DawnTX]

I just had my pace and ablate in February. I have no regrets. I had questions before I even asked them. My doctor gave me insoles and made me feel so good about everything. Why would you want to reverse back to some thing that doesn’t work right to begin with? The reason they ablaze is to block the natural pacemaker from giving bad direction to the heart. That’s the best way I can explain it. Otherwise, it will interfere with the pacemaker. If you don’t get the ablation, you won’t feel better with just the pacemaker. They fit my pacemaker first two weeks later I had the ablation. I asked my EP would I feel better with the pacemaker in. He told me, probably not. In fact, I may feel worse until the ablation. I did not feel worse. Nothing changed other than feeling the incision, which is not a big deal. Think of it as the fact that you are not really hooked up for it yet I arrived for my ablation in a wheelchair. I walked out that evening to the car. That was the difference and my heart rate had been set at 80. It is now said it’s 70 and hopefully down to 60. FYI those are the ideal rates for when you are in bed sleeping. LOL I got nervous because I thought it was all the time but in reality your pacemaker assesses you to the heart rate you should have based on your activity. Live and learn. FYI I can’t speak for other pacemakers because I have a unicorn now but there is actually a back up in my pacemaker so if something stops working back up takes over not only that but I am monitored 24 seven and if I’m not feeling right, I have a hotline to call 24 hours a day and the doctor calls back in less than 10 minutes.

Think of how you are feeling. Unless you can say You feel great and have a quality of life listen to your doctor. There are many people on here with pacemakers. I have read nothing but positive comments they are the ones that got me listening and now feeling normal again for the most part. I have a few other things going on, but the things I can do today that I could not do in February make me shake my head and smile 😊

[Hardjuice in reply to DawnTX]

thanks for your wonderful reassuring reply something I needed right now cheers Dawn TX

[DawnTX in reply to Hardjuice]

I am so thankful for this site. What an amazing group of people on here. I just had mine done so you know it’s fresh in my mind. I think you have questions that I had and I canceled my second opinion after talking to my AP there was nothing more anyone could say he didn’t try to convince me. He explained things that he did not even realize yet had me concerned. As he said to me, he could continue to do ablations, cardioversions, and give me pills because all of those things make lots of money for someone. He believes in quality of life. Prior to him I found once we had a certain age I think they put us in a box marked old , and they want to keep doing certain things not because of safety but because it hold us off for awhile. Sometimes they only hold us off for a day. Every pill we take has a side effect. I have been pretty lucky on that part not bothering me too much but they are still pills and they interact with other things and they make us sleepy and miserable. I’m not sure if it’s the pacemaker or One of my meds I no longer take. No one talks about bladder issues. I was up and down all night long like a child and half the time did not know if I could make it in time to the bathroom. Unless I drink a lot of water before bedtime. I will sleep through the night , I wake about 5:30 to get up. Oh what a difference. I can go places now and not worry about losing it like a child. Either way, it’s a win-win for me to sleep through the night finally. They don’t talk about everything a fib does to us or the meds. I get no swelling. Drop me a line anytime on the p.m. I’m not an expert, but I was blessed with a pacemaker that is relatively new, others could not be used for me, so this really saved my life in more ways than one think of some thing you can’t do now and picture doing it within weeks as long as it’s not bungee, jumping or some thing lol for me it was walking with my dog who loves to roll in the grass ❤️😊

[LadyLawson in reply to DawnTX]

Dawn your story gives me hope. My first ablation is in the process of failing. I expect I will have another. But I have P&A at the back of my mind as I know I will want it when the time inevitably comes. Thanks.

[DawnTX in reply to LadyLawson]

I went for an echo today. I have heart failure, and the doctor wants to see if it has progressed, stopped, or even the possibility it could reverse a bit. I am glad I give you hope because let me tell you I cannot believe how good I am feeling. My cousin told me today he can hear it when I talk and when he watches me do things. Never did I think I could get to be like this again. The beginning of February I could not walk. All I wanted to do was cry, but I don’t do that. I always pick myself up when I fall down but this time since they were unable to get anything out of a cardioversion for me and another medication failed twice I was just ready to give up and was hoping I would not wake up someday. If you knew me, you would know that’s not who I am.

I always say I am 70 but 35 in my head and that 35 year old is almost back again. I think she’s about 50 this time around and yes she gets tired easily but she is still healing and I just spent a year come the end of this month, with a heart rate of 150 constant give or take a few beats. I never thought I could be excited over housecleaning lol but today I was because I could do it. Prior to buy AV node ablation and pacemaker. I was nothing but a lump on the couch. I am telling you this, because I never could believe. I really could feel like this even though people here told me. Getting it done is life-changing and from what I can gather I will only get feeling better when I build up my stamina. Hang in there keep in touch any questions. One of us should be able to help you.

[LadyLawson in reply to DawnTX]

Thanks so much Dawn this is very helpful. I am very happy for you and I’m sure you will continue to improve. I don’t know why P&A is considered a last resort - it seems so much better than drugs although I suppose ablation is the first line treatment when drugs have failed. All the best! x

[DawnTX in reply to LadyLawson]

Pace and ablate is made to look like a last resort. I can understand trying meds before surgery, but to constantly ablaze which means scarring your heart makes no sense. Cardioversions once or twice to try to put you in NSR I can also understand but I saw someone on here that had an incredible number and a doctor friend of mine has had more than 12 now. Surely shocking your heart like they do cannot be all that great for you.

Lets face it these are all money makers. Meanwhile, we are the ones taking drugs with side effects and dealing with possible problems with ablations. My doctor would not do another because of the scarring already. I had more than enough meds fail to bring down my heart rate. Again my doctor felt enough was enough and when they ablate it is difficult to get the right spot even a millimeter off can cause a problem and also it will not work.

We want quality of life. You need a doctor that wants that for you and one strong enough to stand up to the hospital. Refusing to continue doing the same feeling treatments. Most doctors won’t do that even if it doesn’t go in their pocket. To give you an example of pricing, or that they tried to get from the insurance. My first to ablations, one was a cryo- that lasted six months. The other was RF and lasted a year, the cost was a quarter of $1 million each and that isn’t the doctor etc. that is for the use of the Cath Lab and everything where they do it. I recently saw the bill for my pacemaker etc.. I think it was around 100,000. They charge for my pacemaker the way they do for my car lol, there is the pacemaker, leads, etc. etc. I think the pacemaker itself was only 25,000 but then they tack on 10,000 here and 5000 there. Just like with cancer I believe they do not want us cured because these things are too much of a moneymaker.

I was blessed to find a Doctor Who is so passionate about quality of life for us, that I am pretty sure he has had a lot of headaches over it, but he continues to spread the word especially of the pacemaker that I have because it is so unique especially the wiring part of it called HIS. Very sad to think that once again the almighty dollar is loved so much that they will play games with our health.

This is strictly my opinion. I just think what is it that we all want? We would love a cure, but there are so many variations. It’s going to be hard, if not impossible so the next best thing is quality of life with a permanent control of a fib. I am just at the beginning of my journey with this, but the only thing I am aware of will be battery changes right now I am not due for one for 11 years according to the app for my pacemaker Every day there are new things coming out, and hopefully more doctors like mine

[LadyLawson in reply to DawnTX]

Dawn that is so interesting. I’m in the UK so those costs seems enormous. The NHS here is now under so much pressure especially in cardiology that the wait for any procedure seems endless. So I had a private cryo. I now have afib again after a year and I think that the day will come when I need P&A. Your story gives me hope and I remain puzzled that it gets the last resort label. I wouldn’t give two hoots about my dodgy heart relying on a device! So all the very best. I’m delighted it’s working for you and thanks for your full reply 😊

[DawnTX in reply to LadyLawson]

you are very welcome and as I had mentioned previously, I believe it’s because the other things make money. We may not have a cure, but I feel like a pacemaker is possibly the most permanent solution for us. Each reply I have seen on here seems to have the same feeling about it, which I was happy to see. I have a pacemaker called azure by Medtronic. It even has an app. I am Monitored 24 seven. And if they pick up on some thing, they can call and tell me to transmit directly from my pacemaker. They can make changes without my being there, including a safety backup. I don’t even know everything I can do lol I wonder if it could grocery shop for me lol from what I can gather. It’s the wiring that makes a big difference called HIS which they actually say it just like it sounds. I’m glad you feel like you do about getting one. I hope they do it sooner than later for you, so you can get like me and feel normal again I say that because there is nothing normal about a fib when it strikes. Please let me know how you are doing. Unfortunately my cryo- only lasted six months. Part of the team had told me when I went in for the RF six months later that the cryo- is a one shot deal. I don’t know why that is. One year ago today I had the most aggressive and the worst one. It was the vein of Marshall plus a few other spots all at the same time the first week I thought I felt pretty good I think I just had drugs still in me, because after that, I went downhill fast With tachycardia and so much more. I found a new doctor in October and he introduced me to my EP. I didn’t know it was the beginning of life again a second chance at it one good thing for you is I have met someone on here in the UK that I actually got the same pacemaker last year before it was even available here. It is the procedure that is still not well known I believe in fact, my EP was just invited to teach it in Dallas Texas. They want to be able to help people like me. He had presented my case to them when he was a guest speaker. There are so many things they are working on for us, so don’t give up hope.

Well, now I sit and wait for the results of my echo to see what my heart failure is up to these days because there’s a possibility now that it gets rest because of the pacemaker, it will stop progressing, and possibly even improve This is why I don’t understand when people with heart rates of 100 I told it’s OK. I guess the difference is if it is constant like mine was at 150 because that’s why I started heart failure. Our hearts need to rest. Mine was doing this even when attempting to sleep time for coffee. I am still on kitten. Watch here lol so up-and-down strange hours. The cat is sleeping well lol but I am not

[IanMK]

While I acknowledge that a pace and ablate carries some risk, it’s now five years since I had mine. I’ve had no symptoms since and am now able to lead a normal life. I had no problems justifying it to myself; I consider it to be a ‘crutch’ in much the same way as I depend on my spectacles. My ventricles are now 100% paced. CRT devices are very reliable and in the very unlikely event that mine was to fail I know that other cells in my heart will provide a ‘fail-safe’ heart beat This may not be fast enough to go about my normal daily activities - I may be breathless and have to rest - but I will be OK until the device can be replaced. Please don’t worry about the irreversibility or dependency on technology.

[Hardjuice in reply to IanMK]

a question Ian

When a normal person gets alarmed you go into flight or fight

If you get anxious your heart rate increases

As any emotional reaction your heart rate responds to meet demand

So of these are good some not so good but it’s the brain to heart connection

Is that still there after the ablation of AV note

Or are you robotic ( for want of a better word )

[IanMK in reply to Hardjuice]

I try and avoid stress - I attribute work stress as a major factor in developing my heart issues - I retired a year early, shortly before COVID arrived. What I can say for sure is that I've noticed occasional peaks in my heart rate during the night (recorded on my Fitbit) and I suspect this is either being in an uncomfortable position, my body wanting to go to the loo or sleep apnoea. I can confirm that exercise certainly gets my heart rate up, but that the rate is limited to whatever has been set on my paccemaker (130bpm in my case).

[DawnTX in reply to Hardjuice]

I know you asked him, but I am going to stick my nose in. I have only had my pacemaker two months they first set my heart rate at 80 which was still quite a drop for me because I had been living if you call it that, with a heart rate in the 150s for eight months before I had this done. I was using an app to follow my heart rate and if it went beyond 80 I would panic. I finally called and spoke with my cardiac nurse who works with my EP She told me STOP taking my heart rate. Funny years ago I was told the same thing about checking my sugar as a type two diabetic. There is so many fluctuations in both heart rate and sugar that you will make yourself crazy. Now if you really feel terrible, I could understand checking so you can call the doctor or go to the hospital. Otherwise, be aware everyone has their heart rate change when they are more active. The heart rate they set us at is when you are in bed not during the day when you are doing things. The pacemaker can actually adjust so that it gets to the heart rate you would have if you didn’t have all of this done. I am not overly active. Yet but I have had it hit 105. By that time I already knew how it can adjust so it did not scare me. A couple of weeks ago at my first real check up my heart rate was lowered to 70. Next stop if all goes well will be 60. I had an echo today to check on my heart failure that will determine how things are going, but I can tell you I feel really good. I get tired and if I do a few things the following day, I feel a bit beat up because my stamina is not rebuilt yet. Again, nothing to be afraid of. We are healing and it takes time for me. It could be six months, so two down four to go lol.

As my EP tells me, my heart is just like everyone else now. Of course he frowns on bungee, jumping and running the Iron Man. Lol.

[DawnTX in reply to IanMK]

To add to what you said FYI I don’t know if they are doing it with all the pacemakers going forward but I actually have a safety switch that provides back up as I have a new type of pacemaker. I don’t think there’s anyone that wasn’t worried about counting on a device to keep us alive. I am monitored 24 seven and I also have a hotline for 24 hours a day. I have an app and if the other end detects any issue, they will call and have me transmit from my pacemaker. How cool is that?

[Dippy22]

Oh my goodness, I’m in almost exactly the same position, except I don’t suffer from any of your symptoms. I’m 65 with a structurally sound heart.

None of the meds have worked for me. Cardiologist is pushing a P&A on me simply because the wait list to try ablation first is simply too long. He said it won’t stop the afib - I just won’t feel it, nor will it reduce the high risk of blood pooling and causing a stroke. I just don’t see the benefits at present, so I’ve just postponed it for a further month too. I’m trying to find natural methods to balance my body systems and clear out the effects of long term stress issues, etc first. I’ve just had spine surgery and now I’m pain free I can start exercising for the first time in over two years, which I’m sure has had something to do with it.

Good luck on your journey.

[mjames1 in reply to Dippy22]

You said: "Cardiologist is pushing a P&A on me simply because the wait list to try ablation first is simply too long. "

That's absolutely horrendous! If possible, I'd change cardiologists ASAP, or preferably see an electrophysiologist (ep). P&A certainly has its place, but not as a substitute for ablation because the wait list is shorter!

Jim

[Dippy22 in reply to mjames1]

Thanks Jim. That’s my thoughts exactly. With the help of my GP I chose this one to consult privately, but (after further research) that it turns out that his specialty is described as “complex devices and cardiac failure”. I think I’ve picked the wrong one. I’ve already spent a load of money on him. I’m pretty sure there’s other avenues of treatment to explore first. 😟

The one I was due to see in the local hospital is “Treatments for Heart Rhythm abnormalities (Electrophysiology and Ablation), Complex Pacing and ICDs, Coronary angiography and stent insertion (PCI)”. But sadly he doesn’t work privately and is too busy to get to see on the NHS.

[mjames1 in reply to Dippy22]

Yes, people holding hammers tend to see everything as a nail! From what you wrote, pace and ablate shouldn't even be in your discussion.

Jim

[Dippy22 in reply to mjames1]

I saw him again last Monday Jim to express my concerns over whether it was the right course of action but he’s adamant it’s what he thinks is the best course of action. He’s denied me any further investigations and offered NO other treatments. As I said, the wait time for an ablation here in Plymouth is currently around 12 months. Unless you can pay £10k!! The NHS is currently a mess. I’m also reading about left ventricle removal or ligation, which completely removes the risk of stroke and the need for anticoags. No offer of anything except dual chamber pacemaker and full ablation. 😢

[DawnTX in reply to Dippy22]

Dippy the problem with all of the others is that they are only Band-Aids I wish I could’ve avoided ablations and meds etc. Unless you owe one of those extremely blessed people, who’s a fib does not continue to get worse, a pacemaker is the shortest route to quality of life. Mapping an ablation is extremely hard they don’t fail they simply missed the mark a bit. They might have most of the area, but if there’s one tiny spot, you’re still going to have a problem. if you’re a betting person wait and get the ablation and then when you need another one, you will probably have a long wait again. Best of luck on whatever you decide. I think you have a smart Doctor Who want you to have a good life worth living. Pain is minimal. It’s more the incision of the pacemaker than anything else and you will be uncomfortable for a few days with the AV node ablation, but if you are lucky like me, I immediately stopped being breathless. I arrived in a wheelchair. I walked out that afternoon to the car by myself. Doctors make more money if they do the ablations , etc.. I have a different type of pacemaker and also heart failure so I will be seeing my EP for a while yes. Normally I will only see him every 3 to 4 months and eventually once a year and then Cardiologist will take over. So as you can see, my EP is not making any money on me. He has no reason other than wanting to fix me as far as giving me a pacemaker.

[Dippy22 in reply to DawnTX]

Dawn, I think our cases are poles apart. I’m fit and healthy with a healthy heart (I’m off to the gym shortly). I’m just really concerned that no other treatments have been offered bar the radical P&A. Which does not stop the AFib and can result in longterm damage to the left atria (his words not mine).

It would be nice to be referred to an EP! Not seen one of those either. 🫤

[DawnTX in reply to Dippy22]

best of luck with all. I was fit and healthy also and my heart is structurally sound still. A fib hit me from out of the blue. In 2 1/2 years ago. The ablation I had last April was done by the pioneer of it and works out of the same place as Dr. Wolf a.k.a. mini maze. Whatever went wrong with me caused tachycardia and that is what caused my heart failure. Best of luck you need to do what is right for you. Obviously, you know there is no cure for afib.

[JOY2THEWORLD49 in reply to DawnTX]

Hi

I don't want to believe that a fib is for life!

Because it was caused by Thyroid cancer which is now out, I read that sometimes a fib goes.

I wasn't getting any where with BBs and when the CCB Diltiazem 120mg dropped my H/R conservatively.

At night always my heart avge is 47. Even before the cancer. Cold shoulders gives that away.

A year later from the start of CCB my 47 rises to 60s and yesterday at 2pm the h/R avge Day was 62!

So I will keep an eye on that.

I did try only BB Bisoprolol but ECG not good. My Dr away so I tried myself.

Earlier we had tried only CCB and BP rose which needed control.

Interesting these trial runs.

Returned to Diltiazem 120mg AM and Bisoprolol 2.5mg. I'm not to worry that H/R Day stays down in 60s.

cheers JOY. 74. (NZ)

[JOY2THEWORLD49 in reply to mjames1]

Hi

? Doesn't P & A mean Pacemaker with Ablation????

cheri JOY

[DawnTX in reply to JOY2THEWORLD49]

Yes Joy. But it is the AV node ablation a one shot deal. The other ablation can be done over and over again if you have a doctor doing that. My doctor would not do any because I have so much scarring from three. The other ablations need to get to the spot where the problem is but pinpointing that is difficult even with the equipment they have. This is why people need ablations over and over again. My ablations are still there and holding. It’s not like they fall apart. They just didn’t cover enough of the area.

[JOY2THEWORLD49 in reply to DawnTX]

Hi Dawn

I understand that here in NZ surgeons will do 3 ablations!

I guess they do the pace and ablate after that. Why don't they call the ablate something else.

It sounds like a BLOCK.

BLOCK at the heart's electrical.

I'm learning. But the other lady says that she has a pacemaker without ablate!??

cheers JOY. 74. (NZ)

[Dippy22 in reply to JOY2THEWORLD49]

My cardiologist said he’d install the pacemaker and try betablockers first to see if they could control the AV node. If the drugs don’t work, then he’ll go in and do the AV node ablate (burn it off and kill it permanently). Then the heart is fully reliant on the pacemaker to set the rhythm.

[DawnTX in reply to Dippy22]

your heart being reliant on the pacemaker is not as drastic as it sounds if you get a pacemaker anything like mine, because I actually have a back up switch in my pacemaker. If it stops, I don’t just die and even your own heart can still beat what they are destroying is the natural pacemaker, because just think of it as being broken and I can’t be fixed. It has you out of sync for me. It was the ventricles both of them. I was on calcium channel, blockers, and beta blockers. Nothing worked for any length of time. I had no problems with those many people do.

As I just told joy, I don’t know your particulars. The reason I have the pacemaker I do is because I have unique situations going on, including a typical flutter, which is not really helped by the pacemaker nor does it really bother me. I am not a doctor Dippy I’m not trying to figure yours out I can only speak from my own. Until the pacemaker I have was released recently there was no pacemaker for me. Without controlling my heart rate, I would’ve continued in heart failure. That is what my pacemaker mainly does is control my heart rate so I no longer have 150 or so beats per minute which is what I had since last April. There are so many devices now for so many different situations. I wish you the best. FYI they obviously are trying you with the blockers to stop the natural pacemaker from messing up your pacemaker. I really don’t think we are is poles apart as you think. Before this hit, I was swimming and exercising at least five days a week, and I could be in the pool for hours exercising in there as well. I also walked 5 miles a day. The good thing about the AV node is, if all goes well, you’ll be off everything but your anticoagulant eventually.

[DawnTX in reply to JOY2THEWORLD49]

Joy the AV node to me is a block. It keeps our natural pacemaker from sending bad signals. The pacemaker is the boss. I’m guessing they call it ablate because to create the block they do burn and block the area. I’m not sure if everyone gets it the same way, but they did mine through catheterization.

I have noticed people without the AV node. I don’t know what their particular heart situation is. For me there was no relief and I knew this going into it until the AV node was ablated even though my pacemaker was already in, it did no good until those bad signals were blocked is the best way I can put it. When they put my pacemaker in my doctor told me straight out that if anything, I might even feel a little worse because of the incisions for the pacemaker, nothing drastic. FYI just like any cut. It is a little sore. As I said previously, I think it was in my head. I felt the weight of it and was just very aware that I had some thing new planted in me lol. At no time did I have pain bad enough to make me want to cry or anything like that. I was so afraid to look at it because of the way they bandage it. It is very serious as far as keeping it clean. If any debris gets on the pacemaker itself, they must remove the entire thing and start all over again with additional things to be done before they can do that. I also had a glue like substance over my stitches. You need to make sure you keep your brush straps away from it. My EP suggested wound pads. They actually sell things you can slide onto your bra strap but I don’t see the need to go that far and buy it on Amazon.

Again, all I can say is how amazed I am at the difference since getting my pacemaker and AV node done. Sometimes it’s almost as if a fib had been a bad dream and I have woken up from it. Yesterday having to go for my echo and getting a few errands done has made me a bit tired today. Nothing drastic.

[Gumbie_Cat in reply to DawnTX]

Some people get a pacemaker because they have a low resting heart rate, despite the A Fib making it shoot upwards. So the device stops the heart rate going too low, and pausing - allowing medications to reduce the heart rate to be used more safely.

[DawnTX in reply to Dippy22]

I just read your post again and it’s true. It won’t stop afib but picture, putting a fib in a concrete room, surrounded by Barbwire and more lol it’s not gonna get you again I think of my pacemaker as my hero protecting my heart. I also have a typical flutter. It is possible to still get that intact. I’ve had one or two but it never bothered me that much except when it was permanent. I am just going to live my life like a normal person now according to the doctor, I can do the same things when I am healed as anyone else with a heart.

I also have back problems. I was supposed to get my spine surgery when I got to Texas a year and a half ago but instead I got a fifth coming back worse than I ever had it. If I continue to heal and my heart failure does not get worse. I should have cardiac clearance by the fall finally. I have severe spinal stenosis, but mainly, I have a disc in my lower left with a nerve somehow stuck around my hip the best they can do unless it has changed is a laminectomy. One of my best friends has had it twice the second 20 years after the first and he is a semi pro golfer, so you can see why he needed another. I guess I will no longer be able to be a trapeze artist lol I think I can live with that.

I am still on metropolol right now it’s only been two months and I will stay on my Xarelto for life, unless something better comes along. I am a big believer in anticoagulants. I had asked two years ago about the watchmen, but even then I was not a candidate. even on me there’s only so much room in there I guess lol I am already the bionic old lady.

The other day going to get an echo done I was talking with my cousin in the car and he said he is so thankful to see the way I am now. He said the difference in my voice and every other way is amazing and doesn’t seem possible but it is. Sometimes I feel like I had been in a really bad nightmare about a fib and it wasn’t real. That is because I can’t get over how much I feel like myself now. I still get tired at times like Monday. I wasn’t doing anything really but just the long day makes me exhausted the following day, but my EP believes that could be the heart failure. There is a med for that new ones. He told me much better than they had before. Every day is a new day. Remember that it’s what keeps me going.

[Gumbie_Cat in reply to DawnTX]

Best of luck with the surgery. I just meant that people were commenting that not everyone with a pacemaker has the AV node ablated. Sometimes preventing the low rates, plus meds for the high rate is used.

I don’t think a pacemaker will be suggested for me at this stage. I’m in permanent AF, but don’t think the rate is too bad. Managed to walk up quite a few inclines this holiday, then up a huge tower in a castle. I had thought the steps just went up one floor 😂

[DawnTX in reply to Gumbie_Cat]

I understand. Yes I agree what I’m talking about is because of my fast heart rate of 150 constant. It depends what the natural pacemaker is doing. If it’s not causing the problem why get it fixed when it isn’t broken. That’s why I always say we are all different even if we think we are not, I probably wasn’t clear on that. I have no further surgeries hopefully none in the future unless they come up with some kind of wonderful plan for heart failure. Otherwise it’s only medication in reality I think of how a little time I probably have left anyway just because I am old .

[Gumbie_Cat in reply to DawnTX]

I’m pretty old too, and in some ways I’m glad that I was told that more ablations are not right for me - even though it takes a while to accept permanent AFib. If it becomes necessary then I would definitely go for pace & ablate, but they’re the experts. My HR does still shoot upwards at times, but I think they will decide that the beta-blocker is keeping it ‘good enough’.

[DawnTX in reply to Gumbie_Cat]

I hope that your a fib is not that bad, but at least you know you have an alternative if necessary down the road. Nothing worked for me, but I keep getting called unique lol my permanent a fib was also permanent tachycardia, so that made a big difference in a very bad way and it would put me into heart failure. All I can say is how thankful I am that I found my cardiologist and EP when I did.

[ian16527]

I was speaking to someone today who has had the pace & ablate last year.

He has had a pacemaker, one lead and an ICD previously.

His GP said dont worry, the AF wont kill you but then he had an arrest. He was a big drinker which caused the issue and he has a weak right side of his heart I think. Luckily he was given CPR for 20 mins till 2 ambulances arrived

He doesnt drink now and the Pace and ablate has improved his life vastly

[JOY2THEWORLD49]

Hi

Interesting...

I take a lowered dose of Diltiazem 120mg AM and only have swolen ankles if I do a lot of driving and in heat. I take nothing for it.

The private Dr also left me on Bisoprolol 2.5 PM.

The Diltriazem 180mg dropped my H/R from 156 avge day to 51! The 120mg dropped to 88 and a year later 62 - 88.

The Bisoprolol checks my BP better. Night H/R avge always is 47 no matter what drug.

Metroprolol is banned as only on 23.75mg I had 2 pauses x 2 secs at night.

So twinked doses give me 123/70-77. 62-88 avge DAY

Controlled. No ablation as I have enlarged Ventricle Chamber and last public H/S tells me that I have a soft systollic heart murmur.

Drs never wait the 20 minutes at rest, no moving or talking before they take BP and H/R. Do it and find out.

Ablation kills a little of your heart! Pacemaker makes heart that miss a beat .. beat.

Take your time and consider the best for you.

I've never had a cardioversion either.

cheri JOY. 74. (NZ)

[DawnTX in reply to JOY2THEWORLD49]

I had two cardioversions. I could understand trying to put us in sync once the meds should keep you there. Unfortunately, my meds did not and 3 1/2 weeks later, while sitting on the couch afib returned. I was crushed because the cardioversion was like a miracle 150 heart rate when I went to sleep, unable to walk. After, heart rate 82, when I turned around upon opening my eyes. For some reason, my face smiled even before I saw the heart rate. Evidently oxygen floods that quickly OMG I felt like I could dance out. I did not dance but I was able to walk to the car for 3 1/2 weeks. I had the Time of my life as the song says I walked my dog around the acre we have and did things I had not been able to do for over a year and a half. Did you know you could enjoy washing dishes lol.

The week of Christmas my doctor tried another cardioversion. I was going to stay in the ICU and take meds for five doses. Anyone scared of a pacemaker? Think about why you might have to stay and be monitored 24 seven taking a pill? Now that scared me. however, my cardioversion failed. When I woke, my doctor told me they tried three times to shock but nothing. The meds were only to keep me in sync, so there was no need for the trial end testing.

I have been scared to death of the cardioversion people here talked me out of the fear not into the cardioversion, but did tell me how good you might feel. Everything happens quick if you have a good medical team. They kept me laughing and talking and when each one came in, they introduced themselves and told me what they would be doing for me. I have incredible doctors, both Cardiologist, who did the first one and my EP. the worst part of all of it was spraying my throat with yucky tasting spray lol it was like a bad cough drop the next thing I remember was not remembering anything lol they had me covered up, cozy and warm surrounding me in caring people. It was not a bad experience at all. I think what bothers me in the beginning was seeing videos etc. if you’re going for a cardioversion and have not looked at anything don’t look at anything lol they are in accurate may be done when they first start it. I had someone here send me a video. It was a guy on a regular bed sitting up, it was not pleasant to watch. It was frightening and that was not how it goes. At least it didn’t for me.

When you don’t think you want some thing think about what you have right now do you really want to stay that way? I was anti-peacemaker now I could work for the company selling it because I only can sell things I believe in and all my goodness at least for me I believe in it, and I tell all of you we are all different. I have a few rules I believe in, and that is not to compare yourself totally with anyone else. It may sound the same but unless you can read their charts, you just don’t know. The other thing is ask your doctor don’t ask us anything urgent or important and don’t mess with your meds. Call your doctor. Just an extra pill like digoxin can make you hit the toxic level depending on YOUR body I am sure the same goes for other meds. Also, depending on what else you are taking please we have a great group here and don’t wanna lose any of you to stupidity playing with your meds.

[Gracey23]

I’ve read your questions and all the thoughtful comments and would like to respond as I’ve received the pace and ablate 5 weeks ago. My background: I’ve had AFib and Aflutter for over 18/years and have been on meds which controlled my episodes very well for many years. In 2011 I had an ablation for flutter which was successful. In 2015 I had a cryoablation which lasted 4 months. I did ok with changes in meds until my episodes in 2020 started to get more intolerable. On November 4 of 2022 I had another ablation which failed immediately. In January and February of 2023 I had cardioversions which only lasted a short time.

I’m a healthy 73 year old with no other health issues and am fit and not overweight. My EP who is a top Dr in Boston Ma has been by my side with his expertise since I started seeing him back in 2011, he gave me two choices which was have another ablation or have a pace and ablate. He told me that he wouldn’t make this decision for me ! My quality of life was so bad at the time, so lightheaded and breathless with almost daily AFib episodes . I knew I had to do something right away because I couldn’t go on this way anymore. After discussions with my family and my EP I decided I couldn’t endure going through another ablation so got the pace and ablate on March 22. It has been 5 weeks since procedure and I’m so happy, My EP had told me before doing the procedure that his happiest patients are the ones who have had this procedure and now I’m one of them.

I am writing my story not to influence anyones decision but to give all hope that with a good Dr we can all get the relief we are seeking. Knowing a pacemaker is doing the job for my heart is at times an unsettling feeling for many reasons but I have a life back! I was very sick and unable to enjoy my life with the constant worry of what was to happen to me with my racing heart. Im off Flecanaide which I’ve been on for 18 years and stopping metropolo next week. I will remain on Eliquis for life but I’m sure that would be no matter what treatment I chose.

There is hope out there for all of us and hope my story will help someone make a decision right for them. We shouldn’t suffer nor give up! Life is so worth fighting for! I was totally hopeless just a few weeks ago feeling scared, tired and let down by my body. Please don’t accept taking toxic meds and doing ablations over and over which will weaken you even more. Yes AFib is a progressive condition so please be proactive and get your life back sooner than later.

I’ve read so many stories over the years from this group and I thank all of you for sharing. This is my first time telling my story and my hope is someone will feel the support that I have. Do what feels right for you and don’t doubt yourself. We all have got this,!

[Hardjuice in reply to Gracey23]

thanks Gracey

I’m two weeks into pacemaker implant and I assume the ablate part will take place in the coming few weeks

At that point I’m hoping to be as comfortable and confident as you are after taking the plunge

Thanks

Keith

[Gracey23]

Best of luck to you!