GOING FORWARD

[DawnTX]

Yesterday I met with my EP for my two week follow up. The follow up is for my failed cardioversion. They tried three times to Shockett with no NSR. Yesterday was to be about what’s next. My body responds to things usually but does not stay for very long. I had a typical flutter up until two weeks ago now that’s gone and my a fib returned with a vengeance.

I have warmed up to my new EP he could not have been better explaining options and what he thinks would be best for me. Meanwhile he has doubled my digoxin and Metropolol S. It cut my heart rate in half but only for two weeks just like everything else with me it seems. Last night was the first dose and I went from 150 to 86 in less than two hours.

he will ablate if I want to try another but it was already clear before he does not think that is the choice for me. At this point they are not trying to fix a fib because he believes there is nothing more they can do that will hold. It is permanent and nasty. He also explained another ablation for me is pretty much wasting time when I could be on the road to feeling much better. Pace and Ablate. He said it’s a special pacemaker with two leads to my ventricles. If they do not start beating together with everything I am going to end up with heart failure. He said they can even set it to the heart rate they want me to have. I don’t know how many of you out here are familiar with this he said the name of it but I forget. I thought he said something like conductive but my head was swimming. He believes my life will be much better. This pacemaker even picks up when I am doing something more active such as walking or exercising and it will readjust itself. I am not going to try another ablation I’m tired of wasting time. I am supposed to have a second opinion with another doctor my concern had been being put in a box with a checklist but after yesterday I no longer feel that way because he explains why he believes this is my best choice to have a life again. Anyone I speak to considers this guy a rockstar yet he doesn’t act that way. He seems very honest with what he tells me whether I like it or not lol. The longer I wait the older I get and the harder it will be to make things better I think so at this point the pacemaker is probably my choice. I feel much more secure in my doctor after yesterday.

Sorry for the novel just thought I’d bring things up to date since the failed cardioversions two weeks ago. The past week I have felt the worst I have felt except for when I had my VOM etc. in April. While speaking to the cardiac nurse yesterday I got the worst pain in my chest in front of her. I have started with a new stronger pain. Today will be my first full day of the new dose of meds I’m hoping I can feel like a human.

[mjames1]

Hi Dawn, You might want to look into a surgical ablation option such as mini maze, or hybrid/convergent. Only done at selected centers but these procedures have better odds of success for persistent/permanent afib . Jim

[DawnTX in reply to mjames1]

thank you. I am blessed to live in one of the best places when it comes to medical. I live a couple of hours outside of Houston and had a procedure there last April. I had considered the mini maze but unfortunately I’ll be honest that I am running out of time and physically have seriously failed since April. Dr. Wolf is in the same place that my previous EP is located and they are both pioneers. DeBakey cardiology/Houston Methodist is the best of the best. To start over now would take time I already have dealt with there and I know firsthand. Honestly to start all over again it would probably take a couple of months and I don’t think I have that amount of time to play around. Around October of 2021 year is when my ablation stopped giving me quality of life and I was caught up between moving between states. It took four months because they are so thorough and need every record on you before they will even meet with you. Right now I’m not sure I can last a month. My EP doubled my meds and just to show you what’s happening with me, he just put me on them two weeks ago and they have already stopped bringing down my heart rate which is why he doubled them. I am not fooling myself as far as them being the answer and neither is he. Everything done to me or given to me for medicine has had a short shelflife. Both my cardiologist and EP agree that for whatever reason my body is resistant. My cardioversion the end of October lasted 3 1/2 weeks. I forgot what it was like to feel so good. I just had another one two weeks ago in which they shocked me three times and no NSR. I am not panicked but every time I try to stand up even to head to the bathroom or kitchen I am weak, nauseous and have crushing pain in my chest unable to breathe. This is why I feel I have no time to wait now. Mentally and physically as much as I hate to admit it because I hate failing, I don’t think I can take anymore if you saw what I could do last October when I packed up my house by myself pretty much you would be amazed that that same person is me now. The change is not a good one to go from packing and lifting boxes packing up the car and more as well as handling my big dog and cat today it was all I could handle getting up to feed my dog.

Please do not think I don’t consider your idea great because I do it’s my body not paying attention that is the problem. Thank you again

[mjames1 in reply to DawnTX]

Hi Dawn,

Yes, you have to listen to your body. Hybrid/convergent and WMM appears to have excellent results, but the recovery process does give me a little pause, at my age. Good luck whatever you decide to do.

Jim

[DawnTX in reply to mjames1]

I believe that may be another name for what I had done in April along with the VOM and yes hard to recover from for some. I never have. It’s one of the reasons I am exhausted physically and mentally I was thinking six months but it has been more like eight now. Time to move on. From what I am hearing from people including one who has the same type of pacemaker I will be getting I think, the difference is almost immediate. I saw that happen with my first cardioversion although it only lasted a couple of weeks. That shows me there are miracles. I felt it when I woke I had a smile even though I did not know what had happened yet. It was like a big heavy cloud or rock had been removed from my brain. I entered the hospital that day with a heart rate over 150 and I was in a wheelchair. I walked out with a heart rate of 82 and the keyword here is walked. For 3 1/2 weeks I was able to take my big dog out and do the perimeter of our property which is almost an acre. I could hop up off the couch if I left something in the kitchen. No, when I stand up I have my crushing pain in my chest again and I can’t breathe as well as my legs and arms throbbing. I also have found out that without oxygen going to everywhere it is the reason I have no appetite. The heart will feed the most important areas like the brain and the lungs first so it is not my imagination I am just a lump

today is another rough one I am trying to do a few things you would think I was doing construction on a highway. I had mentioned to someone that the end result is about quality of life and being able to have a life. Whether it is done by controlling the a fib or letting something else control my body no longer matters to me. The a fib is permanent so it is time to move on and start feeling better😊

[BobD Volunteer]

It is pretty clear that if cardioversion was unable to put you into NSR then any kind of surgical ablation. cryo, RF or whatever will be a waste of time, effort and in your case money. The pace and ablate procedure (done six weeks or so apart ) will hopefully re synchronise your ventricles and restore a regular pulse even when the left atrium is fibrillating so your quality of life (QOL ) should, be greatly enhanced. Sounds like a great and above all honerable bloke.

[mjames1 in reply to BobD]

I failed an electrical cardioversion (three attempts) but naturally converted the next day. I have since had a successful electrical cardioversion and also have since maintained sinus rhythm with and without drugs for many months. Point being that one failed cardioversion is not an acid test to predict the result of a future ablation. In fact, my ep says my chance of a successful ablation is the same as anyone else's.

What therefore makes you think that any type of ablation is a waste of time for Dawn? What about mini maze or the newer hybrid/covergent procedure? As a non professional without her medical records, I'm not saying these procedures are a right fit for her, but certainly worth asking about before committing to a pacemaker

Jim

[DawnTX in reply to mjames1]

Jim if you did not see you earlier. I have had several ablations already. The first was for six months the second lasted a year and a half. The end of April I had a hybrid although they didn’t Collett that at one of the best hospitals in the world. DeBakey cardiology/Houston Methodist. My EP is the pioneer same as Dr. Wolf. Dr. Valderabano did the Vein of Marshall and as well as other areas. They used my neck, wrist and femoral artery. It was a six hour procedure. I have never recovered. My flutter did go away until recently and up until two weeks ago I had atypical flutter meaning the opposite atria. After the field cardioversion it was gone and my a fib came back with a vengeance. Leave it to me I’ve never done anything expected I am always a surprise. So I had the ablations as well as a cardioversion the end of October. It was the first time in a year I felt normal and physically I felt so good unfortunately it only lasted three and a half weeks. Also, I was put on digoxin two weeks ago and it brought my heart rate from the 150s down almost to the point of going to the ER at 60. The next day it was back in the 130s and has climbed since then. He doubled my metropolol and digoxin for the next month mainly to give my heart a break. What you may not know is that since April I was running with a heart rate constant in the 150s. I have an implanted loop recorder to prove it.

I have not given into the pacemaker without heavy thought and until yesterday I was dead set against it and even have a second opinion set up for the end of the month. My EP did not know what a hard cell I was going to be yesterday. The funny thing is I did not even ask him questions yet but he gave me answers to everything I wanted to know and would’ve asked. He does not treat me like some kind of dummy he told me options and why he likes one more than the other. He very plainly stated he could just sit back and keep doing ablations and take the money That is not why he does what he does. He wants me to have life again. My heart is heavily scarred now. Mapping can be difficult that is another reason for believing an ablation would not be worth the time. There is no guarantee as you know just like there is no cure. We all have to make the right decision for ourselves. Do I take the chance and spend several months waiting for another opinion about the mini maze? Honestly from what I know now as of yesterday and how I feel I don’t think I have that kind of time without dire consequences at this point. I’m not trying to be overly dramatic but as you know unless someone can walk in your body it’s very hard to explain

[etheral in reply to DawnTX]

Dawn, curious if they ever tried the Tikosyn (dofetilide) before the CV? Sorry to hear of your difficulties..etheral

[DawnTX in reply to etheral]

Hi. I was supposed to go on it two weeks ago following my cardioversion. Unfortunately the cardioversion failed so they tried to shock me three times. That is why he has me on digoxin right now because you need to be NSR for the other. I had already been admitted and was going to be in ICU for a couple of days while they started me on it. That is why I was so disappointed it sounded like such a great plan but they only got me NSR for less than a second. I think both doctors and I had not even thought about it failing 😢😟

[etheral in reply to DawnTX]

Tikosyn is used when you are in afib. It makes the conversion to NSR more likely. In my case I converted to NSR without needing the CV which apparently occurs occasionally. If you are in NSR there is only need for the drug unless you are going in and out of afi b. I am in Maine and a retired ER doc. etheral

[DawnTX in reply to etheral]

I have been staying in permanent a fib. I wish they had tried it on me previously. The medical staff in the hospital a couple of weeks ago seem to think it was a good one. Right now my heart rate is staying in the mid 80s since he doubled the dose. He is hoping it will give me a little break before we move on. PS I’m originally from Boston

[MummyLuv in reply to BobD]

I do not agree on the surgical ablation will be a waste of time and money because of failed cardioversions. I had 4 failed cardio versions and a failed catheter ablation and was told by an EP I could not achieve NSR.

This is not the case for surgery given the stronger lesion sets I may not hold NSR for ever but 8 months and counting….

[DawnTX in reply to MummyLuv]

I had a cryo- that lasted six months and RF lasted a year and a half. The one considered a surgery the VOM plus additional ablation at the same time did nothing for me. I remember yours well because I had just joined and also I believe we got them around the same time. he is not basing it on the cardioversion failure. Everything I have tried the last two years does not last usually they have a shelf time of about two weeks whether it be medication‘s etc. that will bring my heart rate down. The one I am on now I was put on the lower dose two weeks ago and I actually got to the point where heart rate was almost too low. Then the next day I was close to 150 again and it has not gone down below 100 since. It is also very erratic even during my ECG the other day it was bouncing from 103 to 150. The ablation may work but for some reason I just have new areas that need to be done on a regular basis. I’ll be honest with you I am worn out physically and mentally. Cd dreamer just wrote me and has the special pacemaker I will be getting. Here it is called a CRT but I believe it is exactly the same. She did not have the ablate because when that went in things went so wonderfully. Mine will be done at the same time.

I like to think I am a classic car or maybe a great antique but unfortunately I feel like an old piece of junk someone just keeps trying to keep going by putting in other parts. Tonight I am feeling pretty good almost just from the meds but this is normal. I’m guessing within a week or so I will be back to square one.

interesting if anyone knows about it, I have had hiccups on a regular basis the last several months. They come out of nowhere and do not fit the criteria that I inhaled air or what is eating etc. they just show up when they feel like it. Anyway I happen to see an article that tells you hiccups happen when there is an issue with your pacemaker. Now I don’t have one yet however it’s interesting to see that hiccups and the heart can somehow inter twine.

I finally received a copy of my medical records from Houston. Both my EPs Will have an opportunity to see what was done in Houston and no one has seen anything until now. It may explain some of the issues I have.

I am very happy for you but I think I have about 20 years on you. In the past two years I felt like I aged 40 years. Mummy Luv I have become quite respondent in just the last few weeks. I did not know you also had failed cardioversion. He won’t try another one. Sometimes I feel he may hold back stuff I really don’t need to know that may really unhinged me lol. That’s some thing else I like is he seems to be able to gauge me mentally right now. When I woke from the cardioversion and he told me it did not work I cried. I never cry. I am on antidepressants where you are physically pretty much unable to cry. I have had two TEE‘s since end of Oct. also several other types of scans. There is no waiting for them here and these doctors have no problem getting them done to ensure safety lol and billing. I think I may be more of a mess in there than he is leading on. One last thing. Two weeks ago and since the last cardioversion it has been all about atypical flutter not afib. In the very beginning I had both and after Dr. V the flutter was gone not sure for how long. Now the flutter is gone and afib is back 😱 I feel like my body is playing a bad joke on me. Last week I told my cousin while we were watching TV that some thing just changed and I thought I was in a fib again. Yup, I was right

no wonder they can’t cure us if this is what our bodies do to us.

I understand why you feel the way you do about what was said but I think I have had far more done than I can ever explain over the last two years and I have no idea what was done in over six hours in Houston.

Thank you for being our hero out here

[DawnTX in reply to MummyLuv]

I meant to mention the waste of money is not a concern lol not because I am rich but because of my insurance all I have is the co-pay of $325 unless they keep me several days and then I pay five days maximum to be kept in the hospital. I have what they call Medicare advantage not just plain Medicare here in the states and I can’t say enough good about it other than I wish they had the HMO where I live because that is even better. My cardioversion with a TEE was $90. I am very blessed having all of this as well as being able to pick up the phone and seeing my doctor the same day or next day or go to the ER immediately. I can pick up the phone as I did today and speak with the cardiac nurse that works for my doctor . There was a mixup with my new prescription. My local hospital is 15 minutes from my house the heart Institute is about an hour and if I want to go to Houston to my choice of the largest hospitals and the best in the world just name one and it’s probably in Houston unfortunately that is a couple of hours away but it’s drivable. All that being said time is still important. The year went by fast however a lot has happened to me physically and this year and not for the better. Unless I heard him wrong my pace and ablate will be done at the same time. There was no mention of different steps but now you can be sure I will question that. This particular type of pacemaker is two leads to the ventricles my loop recorder will actually come out because the device being used will be notifying my doctors instead. They will set it to the heart rate they want me to have and it even picks up when you walk or exercise which he said I will be able to do and when I do them the device will adjust. My EP is actually part of the Texas heart institute of Southeast Texas. It is affiliated with Baylor St. Luke’s Baylor is a huge medical school in my area.

I am so glad I found you and the others you make me think although I am great at questioning everything anyway. I was in law enforcement so I take nothing at face value

[DawnTX in reply to BobD]

Thank you.

[Gumbie_Cat]

I can completely understand how you feel - sounds like you’ve been through a lot of treatments. I think that  CDreamer has a similar sort of pacemaker, and has found that the ablate part wasn’t even needed in the end.

I have yet to see how my own ablation will work out, and whether repeat ones will be suggested. I do know that a lot of people are very happy with their pacemakers.

I also understand those who would prefer to go by the surgical ablation route, though it’s not easily available in parts of the U.K. I do think that what we choose can really differ depending on our age, how much we want to put ourselves through, and also how much the AF is affecting us right now - including what it is doing to our hearts. There’s also the problem of how medications work for us, and whether there are side effects if they do.

Good luck - you really deserve it to change right now!

[DawnTX in reply to Gumbie_Cat]

yes I heard from CD dreamer and she has what I will be getting. My doctor will be doing it all at once and again I think I have some complications going on that makes his decision different. You hit the nail on the head about your age etc. I am factoring the fact that I am 70 and have been very blessed healing no matter what I’ve had done except for the one in April which I have never come back from physically. Taking laundry out of the dryer should not make me keel over unable to breeze. There is nothing no matter how simple I can do including walking into the bathroom but does not take the breath out of me and more.

if I thought another ablation would help I would do it to be honest they have never been a problem with me even the six hour surgical ones in April where it was multi including Vein of Marshall. I’m just looking at the odds and I think getting the pacemaker where I heal well right now may be the best thing for me. Who knows when my luck might run out on that? Obviously the body takes time to get used to a device in it so I better get it done while the getting is good. I hope I don’t regret i it but I am not talking myself into it he just wanted me over that much yesterday because I didn’t have to ask him the things I want to know he told me first and explained why certain things are good for me. Previously I felt like I was in a box marked old people and this is all they do. He believes in quality of life and so do I. Thank you so much

[DawnTX in reply to Gumbie_Cat]

Please let me know how you do and keep us in the loop. We are all so different when it comes to this crazy heart issue I don’t even know what to call it

[Gumbie_Cat in reply to DawnTX]

I will let you know how the checks go after the blanking period. I know what you mean about railing against being put in an age bracket - I worry about being resigned to medications that don’t properly work. I’m 68 now, but over the past 1.5 years I lost both my older sisters - at 79 and 77. The second was due to a brain tumour, completely different thing, but the first was a massive stroke. She had one in her 60s, was on warfarin due to A Fib. Started taking bad falls, inactive, swollen ankles etc. I didn’t fully understand at the time, she lived a bit away, but looking back I feel like it was an example of poorly controlled A Fib.

So, I hope I can keep going longer - my brother is great in his mid 80s - but it does make me more aware of what life could throw at me.

The important thing is that a pacemaker can be an answer that controls the A Fib before heart failure starts to become an issue. Then, we don’t want age to be a box - but factoring in that recovery time and the uncertainty, does make decision making different,

[DawnTX in reply to Gumbie_Cat]

I am sorry for your loss. Yes earlier this year when my a fib came back after a year and a half I was falling constantly. I had moved and was between doctors and had to wait to see the one I was referred to. It was frightening. Then in March I got Covid which did not help matters. Going back two years I am blessed I am here after my first known afib event. Without warning I blacked out and hit the concrete floor then fell a second time backwards in my small bathroom landing between the tub and toilet. Then I went to sleep.

prior to yesterday this was a choice I was fighting. My doctor has no idea how easy he made my choice. He obviously has a gift he was unaware of because he told me everything I needed to hear and I did not have to question him. It has to be his style and it’s a good one. He is very young without personality lol. However I know that this is the time to get this done while I am still healthy enough to be able to without it making me feel worse. You are the other person that has assured me it’s the right choice.

The meds have kicked in. He had doubled my metropolol and digoxin. My numbers have dropped continuing to stay in the 80s now tonight. The problem is that even with low numbers I physically do not feel much better. My head is clearer and I have some relief in my chest from the crushing feeling but I am still breathless and still feel horrible. It would be nice if the med could make me have normal HR and make me feel better. This just shows me I definitely need more drastic measures. He did not drum it into my head but yes heart failure is the number one concern now. I am so happy you reached out to me. Obviously I do have angels watching over me🤗

[Gumbie_Cat in reply to DawnTX]

Those blackouts must have been terrifying! I’ve had dizziness, and one funny bump back into sinus rhythm, but luckily I was sitting down at the time.

I hasten to add that I know nothing about pacemakers from a personal point of view, only what I’ve seen online and by word of mouth. But it sounds like this EP has your confidence, and also that he’s looking at you as a whole person who has already been through a lot.

Still a difficult decision for you.

[DawnTX in reply to Gumbie_Cat]

this is very hard although much easier since Wednesday. I knew nothing of them either although I have two friends in Florida that have them. That did not help that actually made it worse for me because I am very aware of lifestyle changes. The difference is that this is not a regular pacemaker. My problem is tachycardia And I’ve been living over eight months now with very short breaks from a heart rate in the 150s constantly. It is horrendous and actually the blackouts were nothing compared to my daily living. The blackouts I was not really aware of. I got up to go to the bathroom. I realized my face was cold then realized I was on the floor facedown. Then I got up hurting all over and got to my bed so I thought. The en suite was close to my bed or so I thought. I went to sleep or so I thought. When I opened my eyes it took a second and I realized I was looking at my bathroom ceiling. I had gone back down again in my tiny bathroom with my head between the toilet and tub. I managed to get up and even looked in the mirror and saw the bad bruising on my back. Well I climbed back into bed and this time I really did. The fact that I woke the next morning I realize now was a miracle. Then I called my doctor I told them I felt. They didn’t ask much I didn’t say anything and took an appointment for the following day what is even crazier is that my doctor was around the corner from where I lived in the hospital on a normal day would’ve been walkable for the ER. Instead I waited. I had no idea what a fib was or that it could ever be what is turned out to be. Florida actually has quite the campaign in fact the states have it I guess but I have not seen it here where I live. It is called no time to wait and it’s all about a fib. I don’t know if I would have realized what happened if I had seen those commercials. To make it even worse I was a medic 😱 even now no matter how bad I feel I do not go to the ER because I have gotten so used to the pain. My cousin knows to get me there if my heart rate goes below 60. Better him than me because I probably will still wait. I don’t know why I do this.

my new EP here is nothing like the one I had in Florida that I adored same about my cardiologist there I cried when I left them. I actually spoke with the one in Florida about a month ago. When I left he told me he is still my person and to call if I need him. So I did and within 15 minutes I had a call from him from the hospital. This new one is the opposite but I don’t need a best friend I need a great doctor. An asked I keep getting told by everyone how incredible he is and every other adjective you can think of. Even in the waiting room the other day when you mention his name The reviews come out about how lucky I am to have him. His profile is very good I already knew that I was still hesitant to see him because I had a different one the one that I am having a second opinion with. This guy is number one to my cardiologist who has every top title. My cardiac nurse told me whatever he tells me I can take to the bank. When you have nurses for 30 years or so of experience and they tell you something like that it makes sense to listen. I don’t know why but when I came to doctors I have been extremely blessed. The care that I have received especially in Houston is usually reserved for the rich. One of his protégé‘s now works for my doctor in Florida that is how I ended up with him. I have a bad taste in my mouth about him if you pick up some thing from what I say. It was not his treatment of me prior or during the surgery it was things that happened afterwards. Now I question everything about him and I actually had considered getting an attorney.

I have been awake almost all night. I seem to have an awful lot of fluid that needs to come out lol the minute I lay down to sleep I need to get back up. It is 5:26 AM lol I am listening to my dog snore

Dog

[MummyLuv]

hi Dawn. I am so pleased you have found an EP you like and trust, that is half the battle. I know you are well aware of Dr Wolf in your state and same hospital as your previous EP and so I am sure you will have compared his approach with the pace and ablate. You will make the right decision for you.

[DawnTX in reply to MummyLuv]

thank you my dear friend. I have no doubt my EP is also aware of the wolf method at Cetera it is what it is right for me at my age that I believe he is interested in so I have quality of life without any more stress. He said I have been through enough already. As most of us know, if it is not curable and my doctor knows my body is resistant so far to everything tried. At this point rather than another ablation and more scarring he wants to write off the afib completely and just give me the quality of life. If I want another ablation first he will do one or so he says but I think he would find a way to talk me out of it if I wasn’t already. Because of all of you out here I know much more than I had plus doing my own research. If I were your age I would go for the mini maze but each day I am that much older and may not handle anything as well. I have a feeling this is what he feels my heart and body can handle. He made it very clear how close I am to heart failure and he is afraid that the stress of another ablation or new afib or flutter could push my over that line. We know everything is a risk. I really wanted to understand why he felt it was a choice plus he had not told me it was not a regular pacemaker. From what I read pacemakers are usually for slow parts and mine is way over being slow. I didn’t have to ask questions he gave me answers I needed to hear before he knew I needed them. Yes I can honestly say I feel good with this guy. The only thing I am still out on is about the Hospital. The people are lovely there the jury is out with me regarding the actual hospital. On the same area of ONE is another hospital which he is a big part of I am going to ask what makes him choose one rather than the other. I wonder if it’s my insurance? Again being of a certain age I am retired and although my plan is very good I know they cut their payments to physicians that except them. When I know what I’m doing I’ll let y’all know but I really appreciate all of this support. FYI the other doctor works at both this hospital but in a different city and also my preferred hospital the one that the other EP works out of The place is incredible it’s like the rest of you we all want the best fighting chance we have both Dr and equipment. I also want to know what type he will put in there because there is a fairly new one where you can get an MRI done. Because of my back injuries MRIs are pretty important and as you probably know depending on the type of pacemaker, you may not be able to have any.

[DawnTX in reply to MummyLuv]

I wish I had known about him prior to my April procedures. As bad as I felt back then I was in much better shape than now. I have really failed physically since that procedure. I am not blaming it but I can go back to that point and now I feel like such an old woman. I don’t think I have the extra time to wait so that I can get that done. Seeing Dr. V took over a month because the first thing they want is to see all the records. Dr. Vu finally released mine. Being in the same hospital and DeBakey I have no doubt Dr. Wolf would see them easily but it will still take time. Part of the reason my doctor is waiting a month is to give my heart a break first. I did not give him my answer yet. As you know all of this is overwhelming. Part of me would like to call him tomorrow and say let’s get it done ASAP. I am not known for my patience to wait lol tonight I will just enjoy being able to breathe while I lay here and not have my heart pounding out of my chest for a change. Thank you again

[CDreamer]

I have the type of pacemaker that your EP explained it’s called Resynchronisation Therapy or RST pacemaker and it’s truly the best decision I ever made. I just had my 12 monthly check and in the last 12 months I had a total of 1 hour 12 minutes of AF, yes I felt it and that was immediately after COVID jab. Nothing since. I did not go forward with the AV node ablation simply because I felt SO much better day one after implant.

Please feel free to PM me if you want more information - happy to share.

I don’t know enough about surgical ablation to have an informed opinion, MummyLuv is far more experienced in that arena but I do know you would need a supportive EP who worked with a thoracic surgeon.

[DawnTX in reply to CDreamer]

thank you so much and I will PM you. Now is your is the CRT where it has the lower ventricles working together and nothing to the atria? That is my problem they are not working together and I am in a constant tachycardia. You just assured me that my choice is a good one. The double meds have started working in one day but I always do that the problem is they only last a couple of weeks at most and then no longer do their job and I am back in tachycardia. I may not wait the full month and speak to him sooner. I thought of feeling good like you described is exciting thank you again I will write to you soon

[CDreamer in reply to DawnTX]

All I can say is that 5 years ago I was in a very similar position but with added complications as I was unable tolerate any medication at all so didn’t have that option.

CRT pacing have 3 leads - 1 to the atria and 1 to each ventricles. I have the Medtronic Percepta - it’s algorithim is set to prevent tachycardia and thereby stop my AF and prevent me from going into HF - which my EP said I would be with a simpler 2 lead Pacemaker.

Link to the Medtronic patient brochure medtronic.com/content/dam/m...

I have an App on my phone to which the Pacemaker reports constantly which then transmits information first to Medtronic in the US and my clinic then downloads all of the information every so often. It is self optimising so apart the occasional, every - 18 months or so, visit to the Cardiac Physiologists who look after the device, I don’t see anyone. If there is a problem, it is picked up immediately and then I would see my EP.

Hope that helps explain.

[CDreamer in reply to CDreamer]

PS - without it my EP told me I would be in heart failure within 12 months.

[DawnTX in reply to CDreamer]

wow we are very similar. You have made me feel that my choice to have it done is the right one. I can tell my body has had enough and it’s time to help it. Thank you so much.

[4chickens]

We can only make a decision on the information given to us and our own research, you’ve done both these things admirably, you’ve also found an EP that you respect and trust. Sounds to me like you’ve made your decision on sound judgment and good old fashioned gut instinct. Sometimes hope, belief and feeling a connection is what we need to make the right decision.

[DawnTX in reply to 4chickens]

Thank you

[dedeottie]

Hi Dawn. I am so sorry to hear how much you have been struggling. I hear exhaustion in your post and not surprising with all you have had thrown at you. I feel you should look forward to pace and ablate now and don’t see it as defeat. So many on this forum have testified to how much it has improved their lives. If I need it in the future Of course I will be nervous but I will also embrace it as my chance at a better quality of life. I have looked into this as a very real possibility and even got as far as the pacemaker stage. If it hadn’t been for a crushed vein which halted proceedings and led to a new EP trying one last ablation, I would be at your stage right now.

I hope that your EP gets things moving quickly now and wish you all the best.

Take Care x

[DawnTX in reply to dedeottie]

Thank you so much. I feel much better about it now. Without my having to ask my questions my EP answered them all. At this point my afib is permanent. He does not want to waste more time on it and prefers to give me quality of life and a life again. He said I’ve been through too much already. This is all I really want. Wouldn’t that be why you would want afib cured if you could? I just want to be able to breathe without crushing pain and walk without getting sick, breathless and feeling horrible. It doesn’t matter how little I do because the second I stand on my feet it hits me. This is not living. This particular pacemaker will be set to the heart rate They feel I should have and it actually stays in touch with the doctor regarding any type of issues. Because of what I can do they will be removing my loop recorder as it will no longer be needed. No doubt even in the past couple of years they have improved on things. This will be a two lead type of device for the ventricles only. The fear that I had previously is now gone since speaking with him on Wednesday. He has doubled my meds in an effort to keep my heart rate lower to give me a break before he does the procedure. I will see him again in a couple of weeks now. It’s my choice. I know there are people that had so many procedures and cardioversions. If they gave you a break for length of time I understand. Nothing I’ve had done has lasted whether it be ablations or medication or cardioversion. Both of my doctors do not want to waste more time out of my life and neither do I. For whatever reason my cardiologist said my body is just very resistant to everything. The past year has been hell so I’m with them as far as let’s get this show on the road. If I could I would probably have it done tomorrow but yes my heart is exhausted right now and so is the rest of me I have always been such a fighter. Working in law-enforcement I had a can-do attitude and failure really upsets me but I also realize this is not my failure and I can’t do anything about it on my own. Thank you so much for the support and remember I am here for you as well whatever the road turns into for you. If nothing else a fib is complicated is exactly what it wants to do. What a vile thing it is 😡

[dedeottie]

Good luck with everything Dawn. You have good doctors my the sounds of it. I am looking forward to hearing of better times for you. X

[DawnTX in reply to dedeottie]

thank you so much the support I have gotten here means a lot. There is no easy answer I am now going to just try to take a breath about all of it knowing what I need to do.

[Buffafly]

Hi Dawn, I’m just wishing you all the best. I am sure you have made the right decision for you. Many people seem to think that pace and ablate is an inferior solution but also I have seen many people say they wish they had opted for it sooner. I was offered another ablation a few years ago when it became obvious my first had failed but I didn’t go for it because I can cope and the meds are working well at the moment but mainly because it’s six months out of my life and probably wouldn’t work because I have a leaky valve. Im looking forward to hearing how you get on and hope your procedure is soon ❤️‍🩹

[DawnTX in reply to Buffafly]

there does seem to be a snobbery which is ridiculous because we are all different and what is right for one is not right for the other necessarily. I already write novels about what was done the last one I had was just as deep I believe as the maze in its own way. It is only a couple of years old FYI just as the pacemaker I will be getting is something new. I need to ask because I want one that can handle an MRI and they actually have it but I don’t know if the special one I will be receiving can do that. Because of needing back surgery and having had neck surgery due to an accident when I was hit by an 18 wheeler it is important to me to be able to have MRIs. I was going to have back surgery when I first got to Houston unfortunately my a fib returned with a vengeance so I am still unable to get anything done. At this point I wonder if I will ever get that pain relief but without my heart it really won’t matter will it lol. This is not your every day pacemaker now I sound like a snob lol it will be sent to the heart rate they want me to have and it works on its own to adjust to different things I am doing such as exercise or walking. It also notifies the doctor if anything odd is going on because of this they will remove my loop recorder. It is two leads to both ventricles they have a three lead but that will not be necessary to have a go to the atria. If I were in my 50s like Mummy Luv I would have already knocked on the door of Dr. Wolf. But realistically I am 70 and the main points my doctor has pointed out is how much I have been through in the last two years more importantly in the last eight months with a heart rate over 150 on a permanent basis. Every cell in my body is exhausted and overwhelmed at this point and mentally I am just fried. I made a bet with myself that the meds I am on at the moment will quit working before the end of the month. I have only been on them two weeks And I was back up to 150 so he doubled the amount the other day trying to get me through the month letting my heart get a little bit of a break. If I were to decide to go with the wolf method it could be months from now. Protocol and Houston Methodist is that they thoroughly read all of your records and much more including testing again and again. They do not want anyone’s input of a test they want their own work and I can’t blame them. That is what makes them one of the best number one in Texas, I think in the top 10 or so in the US and also one of the best in the world with people traveling to come here. My second opinion is not about my doctor it is more about the hospital he works out of. It is very nice the people are very kind but I only have one heart and I want the best of the best. I have my dog and my cat to take care of I promised them forever. I don’t know if it’s a form of depression or what but if it wasn’t for them honestly I just wouldn’t even care anymore I just want the pain to stop.

Hugs🤗

[Buffafly in reply to DawnTX]

💞

[DawnTX]

thank you for being a good friend out here. I know you have an interest in the pacemakers so I will make sure you know what’s going on. I actually hope there’s nothing new for the rest of the month other than a lower hr. As of right now I plan on keeping my second opinion appointment on the 31st. I will sit down and write what is going on so I don’t forget when I speak with that doctor. Maybe I should just toss a coin at this point lol. I hope you are feeling as well as possible that’s what we ask for at this point. Thinking of you.