Today was my first real follow up with my EP since the fitting of my pacemaker and AV node ablation done on February 13 and 27th. I have not been feeling 100% although much much better than before all of this. I guess I expected more not realizing other things are in play with me and it’s not just about the pacemaker. for one thing they had the safety back up on for me which should only be done when there is a problem. I have been feeling bumps in my chest, etc. and it concerns me. Evidently the safety is the back up for the heart. That was switched off today and my chest has been nice and quiet so I am able to ignore everything there. It’s hard to ignore when your chest has thumbs and is pounding away. That should all be gone now. Leaving that switch on what is not harmful in anyway just confusing.
Next month I will get an echo done to check the values at Cetera of my heart failure. This is where other things come in to play. Even though my a fib has been controlled as well as my atypical flutter, which is chronic, there are other things we must deal with. The good thing is heart failure can be dealt with with medication. I am actually on three of them already but my doctor said there are new and better ones we will discuss next month. I I still have some fatigue and I have begun to have some congestion, although it may simply be allergies because allergy season here right now is horrendous . I know I am on my way to a much better quality of life because it has already started.
Just a month ago I would struggle to get out of bed in the morning and make my way to the bathroom eventually to the kitchen and then get the dog outside for his little walk. Every few steps I took, I would have to sit and feel nauseous and dizzy, and have pain. Now I can do it all without dreading having to do it. I’m still a little breathless and my legs still ache. I must rebuild stamina that I lost in the past year and a half being unable to walk, etc. it’s going to take time but that’s OK because now I will have time . Without getting my new pacemaker who knows how much time would be left? Everything bad seems to be speeding up but now I feel human and normal again for the first time in a couple of years. I will let everyone know I thought it was going to be much quicker that they would put it in and poof. I was gonna be all better , lol well, it doesn’t work that way because trauma is done to the body while it’s being fixed. I just want to share that with people in case you are like me I’m very impatient and when you couldn’t get up the next day and run around in circles you were irritated lol.
Anyone facing the possibility of a pacemaker do not be afraid. I have no regrets and if you have a good doctor, he will explain the reasons you should have one. Listen to what he says because everything we get done for a fib is temporary except for a few miracle people. I. We will always have a fib, but it is how it is controlled. Medication can help and if you feel good in that, then you have to follow your heart lol and do what you need to do. Ablations can be difficult to map. Obviously a fib is difficult or they would be a cure. Mapping can be hard because if you are just a tiny speck off, they may miss the area that needs to be blocked so the ablation does not work. The more you learn about what our doctors are doing for us the more amazing that they manage to even do what they can for us now. Just remember all of these things are to give us quality of life. I do not want to go through whatever time I have left having an ablation once a year living on meds that don’t work all that great and make me feel lousy, and other ways. The pacemaker and AV node block was right for me. I know we are all different but at least keep an open mind that within a month you are going to have an amazing change in your life. When your heart can be the way it needs to your circulation gets going and you can’t help but feel better . I had pins and needles and total numbness in my feet and lower legs also in my arms and pain to the tips of my fingers. I had brain fog and often got overwhelmed. It took a while for me to realize it’s all because our circulation is so messed up . Believe it or not it gets going again pretty fast and OMG it feels good.
my days are not all sunny and perky, but I try to appreciate and be grateful for the health that I have especially in the past month with the pacemaker. Be good to yourself. Remember you need to heal any injury to your body needs healing even a little finger from a splinter. Energy is tough to rebuild and you need to follow doctors orders on that. He may tell you to start very slow. If you have other things going on as well, those things can make a difference and change recovery timing. With me it’s my heart failure. being on this site supporting each other is probably one of the best medicines there is for a fib 😊 it is nice to be supported and not feel alone. I am very blessed with a medical team that is doing the same thing for me here. I feel somewhat like the car test dummy right now lol everyone is intrigued with me because I’m a new model lol.
I don’t know if I mentioned it, but my EP presented my case in Dallas Texas recently. Evidently there was a symposium of EPs etc.. He told me they are amazed at everything about the procedure, and they have invited him to teach the procedure to their group. That means more people will be able to be offered what I just got. The average peacemaker would not work for me. I would’ve been left without anything except heart failure continuing on. Because of the Medtronic’s Azure pacemaker it looks like I am going to have more quality of life when I thought it was over.
Dr Aditya Saini is my EP out of Lufkin TX. Memorial St LUKES is the hospital and his group is the heart institute of eastern Texas. They are not one of the big fancy places like in Houston but you would be surprised at their accomplishments and awards and it is a place that doesn’t just fix your heart, but it has heart. A kinder group of staff I have not met.
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DawnTX
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I am going for a second ablation on April 28th at the Cleveland Clinic, we will fly out on the 26th. I am terrified because it seems I always am the one with the risk factor going on. Cardiac arrest on Tykosyn, cardiac tamponade on first ablation, and now have developed pulmonary hypertension. So far no CHF, but have been in persistent afib since Sept 11 last year and the drugs to control rates just drag you down. I have a St Jude dual pacemaker. It is so great to hear the amazing things they are doing for you. As time goes they are learning more and more, afib is such a growing diagnosis for many. We just need to share our experiences to support one another, thank you keeping us updated. Bless you.
With a pacemaker called Saint Jude you have to be successful. I never knew they had one with that name. 🙏🏻 One of my favorite saints. I have not had the things happen that you did but everything has failed whether it’s medication or whatever nothing would continue to work.
You did not mention if you had your AV node ablated. Mine was done because I had permanent a fib but now it doesn’t matter because it is shut off from everything else and has no control over my heart. My pacemaker is the boss now and so far seems to be a good one. I also have a typical flutter originally I thought I was told I would still be able to feel that, but today my doctor said that should not bother me. I should not feel it. I should’ve asked for about it but I’ll just be happy if I don’t feel it, I am still a bit breathless tonight but now I know there is nothing wrong with my pacemaker and any of the work done. There is the separate situation of my heart failure that will be checked on when I have my echo done next month. The doctor said we need to wait. I think he may want to see if the rest that my heart is getting now that I have the pacemaker is going to help with the heart failure. Doctor said he was so happy with my ECG. He told me my heart is normal.
You are so right about sharing because others may not be aware of things, and it pays to ask questions. Kathie on here today had spoken about allergy to pacemakers. She has been through awful things but her doctor is not listening time for a new doctor. She is doing without a pacemaker right now that’s just wrong. I have such a great relationship with my medical team, including the tech for my pacemaker that we were talking and I mentioned the allergy to the titanium. My tech knew right away what I was talking about and said it’s rare but it happens. I told her what was going on with Kathie. Sarah told me that they do make one of gold. Wow you could actually have a heart of gold imagine that lol. The point is there is knowledge of allergy and there is a solution out there, so why is a doctor letting his patient suffer, and now live without a pacemaker.?
I hope the Cleveland clinic is everything that I have heard it is. I think I told you I have friends in South Florida that use the one there not just for heartbut other situations one just got his second hip, replaced, and actually walked out with a walker the same day. The other is a disabled veteran who is able to walk and do his job as a police officer because of the things they have done for him.
I had no idea that my pacemaker and the procedure itself was so amazing that there are doctors waiting to learn it from my doctor. I think he was excited that they invited him to do that with them. He deserves it. He cares so much about his patience and our quality of life.
I have not had a AV node ablation, I have been diagnosed since 2014 with afib, but this continual afib has been since 9-11-22. In the past years, have had 17 successful cardioversions, but the last one did not convert. Flecainide had been working for me and propafenone at one time. I was told they found a lot of scarring inside the heart that was unexpected and they think that is why when afib I have difficulty in going back to NSR without a cardioversion. Cleveland Clinic feels the Rocky Mtn Spotted fever from 2007 may have damaged my heart.
is Cleveland clinic the one doing all those cardioversions? To be honest with you I am a bit shocked if they are. I’m not surprised at the scarring from things I have learned. After my third procedure that was enough scarring for my heart. My EP did not want to do another ablation except for the AV node when I had it done. Each ablation is scarring each trauma leaves a mark. When my second cardioversion failed, he was not going for a third. The point of the AV node ablation, at least, with my pacemaker is to shut off the signals from the natural pacemaker, causing the problems and giving control to the pacemaker regarding how your heart will beat. Obviously, my natural one was a mess now it just sits there and talks to itself because my heart ignores it and does what it should do. I was not aware that they did pacemakers without the ablation but then again I don’t know everything pacemakers can do. I’m confused enough with my own lol I’m learning all I can so it’s not to be worried and live my life with quality
My first 3 cardioversions were at CHI, a hospital in Hot Springs, AR. All the rest were Arkansas Heart Hospital. My dual lead pacemaker was implanted after the cardiac arrest on Tykosyn, same day. Cleveland Clinic started my first ablation and got halfway when I developed cardiac tamponade and landed in ICU, I went back 3 months later to finish the first ablation. I am just so apprehensive after all the complications I have had. They are supposed to be #1 in the US for heart, but I realize somebody has to be the odd one out for the 1 in 100 risks for ablations.
CHI St Lukes. is my hospital. I get confused they carry several different names it seems. The Heart, Hospital and Lufkin also has the name Memorial in it. My local hospital is CHI and they all have Baylor and the name somehow it gets very confusing. I know where the heart hospital is if it is the one in Little Rock. I lived in Little Rock for a while and I loved it. It broke my heart with the big tornado that just hit there. When I first moved to Little Rock, they had an EF five hit one side of downtown a month before I got there. I remember the devastation and sadly they were not getting the help they needed.
You really have had an awful time. My second cardioversion failed with three shocks. I was going to be on Tikosyn and kept in the I see you for at least five doses. Now I understand why they do it that way and it scares the heck out of me and I’m glad I didn’t do it. They canceled it because my cardioversion failed. I was put on digoxin while we prepared for my dual lead pacemaker also I have the Medtronic azure and from what I am being told it is made for special cases. I wonder if you also have it. My doctor was just up in Dallas and has been invited back to teach the procedure used on me after he presented my case while he was there recently. Next month I am getting another echo because I am not 100%. It seems that I should be and there’s a possibility it is because of my heart failure. The meds will need to be adjusted. That being said I feel so much better than I did the day before the procedure. We are all different and between needing to heal and other situations we have to be patient.
I am going to Ohio, Dr Patrick Tchou is my EP and has been doing them at the Cleveland Clinic since 1995 I believe. He did say on my first incomplete ablation that a lot of unexpected scarring was found. He now has on board another EP Dr from Poland in his office and I am not sure which will do this surgery yet. It was a complete miracle I landed him in the beginning, there was a cancellation and they called me 2 days after I contacted them and ask if I could get medical records and fly there in 5 days! He has a video on line for the Cleveland Clinic and was head of EP’s there. I know his associate has to be really great as well. I looked at it like, I am going to the best and if something happens they have more volume of pts and will be better qualified to handle any complications in a complex case, trusting God that I made the right choice.
You sound like you are going to be in great hands. They are prepared for you, and that’s what you want. Doctors that think outside of the box and ahead of things that’s why I love mine he has answers before the questions come up. These doctors see us as people not just patients. We are meant to stay here. I think that’s why we get these special doctors. My preop nurse for registration and I have developed a bond. She knows I don’t mind her mentioning religion. She doesn’t go crazy about it but it’s obvious what she believes in and I enjoy talking to her. She told me that God has my doctors hands in his, and that was before everything was done. I like the thought of that I’m not overly religious. I speak one on one with the man I believe is in charge. Since developing a fib, I have opened my mind to many different things. It doesn’t hurt to have an open mind. No one forces you to believe anything. Anyway, you’ve got this far right? My doctor is young, but what he has done in his 14 year career is astounding, and I know there is much more about him than people even realize. He is in charge of the EPS the Heart Hospital. AND I NEED TO CHECK NOW SEE IF I CAN FIND OUT ANYTHING ABOUT HIS TRIP TO DALLAS BECAUSE THEY HAVE INVITED HIM TO COME AND TEACH THE PROCEDURE HE USED ON ME. HE DID A PRESENTATION AND EVIDENTLY THEY WANT TO LEARN ALL ABOUT IT NOW, SO THEY CAN HELP MORE PEOPLE. I AM TERRIBLY SORRY. I HAVE A NEW PHONE AND I DON’T KNOW WHY, BUT IT JUST STARTED TYPING ALL IN CAPITAL AND NOW IT’S BACK AGAIN YIKES PLEASE IGNORE IT. I DON’T FEEL LIKE TYPING OVER CRAZY PHONE
I HOPE YOU WILL KEEP IN TOUCH WITH ME. I WILL TRY TO NOT TYPE ALL IN CAPITALS LOL
WHEN IS YOUR PROCEDURE? LOTS OF PRAYERS, HEALING THOUGHTS, AND ANYTHING ELSE THAT CAN HELP.
you sound like me when I had my first cardioversion at CHI St. Luke’s my local one where my cardiologist is lol that was the team I felt totally in love with by the way and I love my Cardiologist. While they were prepping me I asked if they had ever lost anyone doing less. This is just how I am. I shoot from the hip but I’m sure the meds didn’t hurt me expressing myself lol they were horrified, especially my doctor. They made it a point to tell me no lol I also asked us when they were putting me under to put my pacemaker in and do my AV node ablation lol. Yep I like to double check.
Did you check your foot to see if you have a number stamped or a date? I am teasing you. I think we all worry about what could happen. Recently, I realized that if I did have my time show up while I was there, I wouldn’t know anyway, would I because I’d be gone? For some reason I don’t worry about it anymore a few months ago I had terrible nightmares about that happening to me. I don’t think of gotten this far and had the miraculous things that of been happening to me happen for no reason and I don’t think you survived everything that you have without a reason either.
I have had several people tell me since my first a fib event that I must have things to do. I blacked out during my first one and went facedown on my concrete floor, only to manage to get up and think I was in bed but woke up on my back on my bathroom floor with my head between the toilet and tub. then I got to bed and went to sleep and did not see a doctor for two days. Yes I could’ve easily died that night, but I didn’t. I also was rear ended by an 18 wheeler when stopped at a red light. And I am grateful to still be here which is why I want to try to help other people if I can even if it’s just making one person less afraid.
My pacemaker is a Biotronik, but the mechanical aortic valve that was placed in 2009 is a St Jude. St Jude was bought out by Abbott a few years ago, so don't be surprised if your ID card shows Abbott instead of St Jude.
Hi thank you for the info, but I actually have Medtronic. Someone writing to me has the Saint Jude and I had mentioned how special the name is to me. I had Biotronix as my loop recorder, which was removed when I was fit it with my Azure pacemaker. In February. I am very impressed with Medtronic. I have 24 seven monitoring as well as a 24 hour hotline. They also attend my doctor visits. My pacemaker and procedure evidently is still very new so I am getting a lot of attention. My EP did a presentation of my case in Dallas recently and they were so in awe that they have requested he teach the staff of the EPs there. He is a very sweet and humble man, and very brilliant the more I read on him, so grateful that somehow he came into my life.🙏🏻😊 they all tease me at the hospital about how I had to be special lol it wasn’t the look I was going for. I just want to be normal and thanks to my doctor. I really feel that I am on my way there even with heart failure.
thank you for sharing. I had never heard of Saint Jude for a pacemaker so now I know why because I probably would have asked for it. Lol he was one of my Mom and Dads favorites. I hope that you are doing well. I have been a bit often on as it’s been just a month. That being said, I’m feeling optimistic for some reason today I felt like I turned another corner. Healing thoughts and prayers to you.
thank you hon you are one of my biggest supporters and have been. It’s tiring because I thought I was just going to wake up and be all better lol unfortunately my doctor does not do magic tricks in surgery. He was so happy about how I am doing though that it was contagious, because he was a very quiet and humble man, so when he spoke as he did, I knew it had to be good. I think a lot of us get panicky. at times. It may be because we are tired of being sick but we are just plain tired. I realize I need to think things through before I decide on some thing. A lot of it is common sense just like the healing part of this. Everything needs to heal, and I had had previous ablation, so I should’ve realized this one would need to heal the same way. It’s gonna be OK again I am so thrilled to have a doctor and medical team like I do. I had used the term once before about being swaddled in safety and that’s how I feel. If there’s anything they can do to keep me going I know they will do it and they’re doing it now. Being at the hospital with them is like getting a big hug.
Healing after the pacemaker insertion, and after the ablation must take a while. It seems that a lot of people find the pacemaker so transformative in the long run that the recuperation becomes just a memory.
I am slowly getting used to the idea of the rate control for now. I do get snarled up about the A Fib being missed earlier, and some of the communication issues, but then I reckon it’s only me that suffers when I feel angry. It doesn’t help with back pain either, so I am trying to be much more philosophical.
Though if the medications really don’t help, down the line, I’m ready to stand my ground!
I can be a grumpy cat lol. We have a rogue boy that is showing up at our door and that’s what we call him. Lol he is getting better through love. We all need us and support. Today for some reason I feel like I turned another corner. I don’t want to be too optimistic, but I’m hoping I’m right. We all know we are still gonna have good and bad days and some days somewhere in the middle. I am amazed at how much I have grown fond of so many of you out here, as if we were truly neighbors. I wish we were.
Glad to hear it! We had a beautiful sunny spring day today, and that definitely helps. Still a cold wind, but with a bit of shelter it was perfect. I would completely boil over in Texas though!
it is horrible here right now for the past three days we have had terrible storms with thunder and lightning. We had been having 80° temperatures now in the 50s Texas rain is some thing I had never seen before it is like standing beneath a waterfall. There are no droplets. We had such severe lightning the other night, and a lot of damage is done on the ground. I am grateful for God here that we are aware of. I worry about all the creatures out there subjected to that. My poor dog is terrified of it. I’m not thrilled either. It is still raining. I thought the UK was supposed to have all of this not us lol.
Temperate but changeable here. Whenever there is anything ‘extreme for the UK’ we just complain a lot. I moan when temperature is over 21 C 🤣 Has your wee dog got one of those ‘storm jackets’ to help calm him?
I have tried the thunder shirt on him. Unfortunately it just does not work although he did like the shirt. He has PTSD like I have I’m afraid someone might’ve left him out in storms which is why he is the way he is. His eyes glaze over and it is as if you’re not even there with him, although the last two nights he came on the bed, and he snuggled is close to me. Is he good at the top of the bed and I just held him. I’m not sure if I told you, but my way one is about 80 pounds. He is 11 years old and a sweetheart. He actually has quite the little wardrobe, including his ducky pajamas and he has cow PJs. Also, he has a wonderful winter jacket with a hood that makes him look adorable as well, and every boy needs a farmers shirt and a couple of sweaters lol I lost my cat in November she was 14. The two of them were inseparable. Yes, I dressed them alike When I could, although he didn’t get the pink fuzzy coat that she had lol
Not so wee! Sounds like he is settling down with your care. Our cat is a five year old rescue cat. She was so nervous when we adopted her - hid behind the sofa. She’s now really laid back. Even let’s the grandchildren stroke her, but if they get noisy she will still hide in a cupboard.
lol definitely not so wee he just tried to sit on my lap. I just took my medication and I lay back down for a bit to let it work. Yesterday was a crazy day in the house because of the new kittens. I got up to find them both squealing hanging onto mama. They were squealing because she had moved and interrupted breakfast. I am so happy that I didn’t give up on them. One little one is black and white and the other is striped just like daddy cat There is no doubt who the daddy is. Mama cat looks happier today even with their lectures and she is eating great. lol
I find these babies all of them. I mean are the best medicine for me. I sit out on the porch with them during the day and next thing you know they are all around my feed. It is a beautiful thing.
Thank you I guess I need a little bit of a reality check as far as what does and does not happen when you get one and being patient while we heal my doctor seems to be much more excited about everything than I was. I am definitely still tired and he said he could see I was and I needed to get more rest. I am happy to say that my chest has been nice and quiet since I returned home. it had a good test also because we have had severe storms and they continue now. My dog is terrified. He has PTSD and there is little to console him, but we are making it through together. It breaks my heart to have him so upset. Please take care of yourself and thank you again for your support.
I think most people expect that these sorts of procedures are an instant fix which of course they are not. The body takes time to recover and as we say in our fact sheet on recovery many peoeple are still improving at nine months or a year. Patience is a virtue.
Truer words never spoken, Bob. I did not think when I had the AV node that it was an ablation. If I had, I would not have been concerned with the dull chest pain. I was told in the beginning probably six months for healing, but someone had misspoke to me and compared it to a cardioversion. My one successful one I woke in such a happy great feeling state so that’s what I expected when I woke from the AV node. Apples and oranges. Sometimes optimism takes you too far I guess. All I can say is I have no regrets having this done in fact, I think I’m becoming more grateful day by day and I can be quite stubborn and I did not want to get this when it was first brought up. Oh, how foolish I was. I already have quality of life I have not had Since a fib returned a year and a half ago, in fact, I don’t think I felt this good back then.
We also need to realize that if we have other things going on it can interfere with how we think we should be feeling. Next month I will have an echo my doctor will be checking on my heart failure and what is happening since my pacemaker was fitted. He is hoping to see an improvement, but if not, he has plan B.
Really happy for you Dawn, posts like this really brighten my day. I'm at the start of the journey. Not even had my first CV yet. And though I hope, like everyone does, that I'll be one of those magic people where Afib goes away, I know that if it doesn't my life isn't over! And that's thanks to the spirit of this forum and all your amazing courage. 😊
My journey has not been very long only three years coming this fall. That’s why we all see how different we are because there are people that have a fib that is not so symptomatic and they can have it for years and years possibly just needing a pill. My first two ablation went well so I had relief and actually forgot I had a fib until it came back. I did not have a cardioversion until October of 22 and you can probably see how quickly things began to change for me. I firmly believe now it is all about your doctor and the patient you have in him. If he does not listen to you or respect when he speaks to you, I would find a new one if I were able to if I were you. I know it’s very different depending on where you live, but communication is the number one key with your doctor and you need to have trust in him. We only get one heart. Afib is not a death sentence in any way. I they are ways to make us comfortable with living with it and we also must work on ourselves to become comfortable living with it. We don’t have to like having it no one does, but we have to find a way to keep ourselves settled down enough that we don’t add to the problem. I have found personally, I can get myself worked up. That is when I ask questions and most of the time I have found out that what I am feeling and being afraid of is normal whether it is part of the healing process or changing medication‘s etc. it’s very easy to create drama where there isn’t any , I’m trying not to do that. There are people on here who have found various ways whether it is meditation or yoga, or simply prayer. I have decided I am going to try to live with all of this as if I don’t have it within reason of course. When you’re not feeling well, you have to call your doctor of course. Another thing I was told yesterday is that when we have something else strike us such as a UTI we need to notify the doctor and get it cared for because of the fact that our heart is compromised. An infection can cause a problem better to have it addressed ASAP whether it is a tooth, UTI or whatever it’s a bit more serious for us.
I am trying and I know the pacemaker was right. Recovery is a little bit slower than expected and I have an echo next month so that my EP can see where my heart failure is at this time because that can be the source of what I am feeling right now. I was told yesterday I need more rest. Overall I am happy. About the way I feel compared to a month ago.
Thank you I’m afraid I tend to write the way I speak. Lol. Sometimes it is long winded and a mini series. I just want to help and if one person becomes less frightened, or will consider a procedure, they may not have wanted to get done because of fear, and then I feel like I’ve done some thing. I am blessed that I was given this unique pacemaker and procedure, which evidently is an ongoing mystery And a learning experience even for some of the doctors. It just shows the possibilities for all of us when you least expect it.
"I do not want to go through whatever time I have left having an ablation once a year living on meds that don’t work all that great and make me feel lousy, and other ways. The pacemaker and AV node block was right for me."
Thank you Mike 😊we all do you need to remember it’s still takes time. And I’m afraid I was unrealistic to begin with thinking I could just hop out of bed and feel as great as I did after my cardioversion which I found out is not the case because we have to heal. That being said, I have also been told to get more rest from my EP and I will be having an echo done next month. Because I am not feeling 100% yet my ECG and everything made him extremely happy, he suspects it could be my heart failure dragging me back. I do not have congestive heart failure, and evidently there are two very different types, regular heart failure seems to be some thing people with a fib get because their is simply exhausted if they have been like me with an extremely long period of tachycardia. He needs to wait a month to give the pacemaker a chance to work before he looks at the results. When I asked what the treatment was, he told me it’s medication’s. The good thing is I am on three of them although he said they’re a new and better ones, so don’t worry. He is always miles ahead thinking of ways to give quality of life. I am humbled that this man is doing this to keep me alive and enjoying life. I wonder if he ever sleeps. He is also great at thinking outside the box , I’m not sure how I got so lucky to have this Doctor enter into my life but I am grateful
So for now the dog has to settle for his retractable leash, and or romp with the cats lol. We have an acre of property so if it’s a day that I think he’s gonna be a good boy, I let him off the leash, but he tends to be like me and has a naughty streak in him lol. For a dog that had such a hard life, my boy loves everyone. The problem is they don’t know that lol so when the deer are in the yard and he runs up to greet them, they tend to get a little nervous. We have a group of outside cats. They are not afraid of him now, and will actually throw themselves on the ground when he does and roll around silly. Lol he loves rolling on his back in the grass. This boy never had a forever home before me, and lived in shelters and bad homes. He is 11 now.
you are so fortunate to be able to express on this sight all your feelings on the A/V Pace and Ablate you had done. I had mine about 3 years ago and it made a world of difference to me and quality of life.
My husband died recently and I passed out a couple of times. Now I have a defibrillator with pacemaker due to a different part of the heart, ventricle, messed up. At least I know if I have an episode, the defibrillator kicks in.
I haven’t been able to drive for a year but I’m still here. 😁👌
Honey you are more than just here you are a trooper whether you think so or not. What you have been through would take down a weaker person. I was just writing about the fact that my doctors assistant told me the other day how they are starting to find unanswered questions with a fib actually have answers, but it’s not just the heart it is all of us. I’ve been trying to stay off some medication’s during the fitting at Cetera of my new pacemaker, evidently my anxiety shows to others in the medical group more than I thought. I don’t mean in a bad way, but I was asked if I had medication and I said yes and it was said perhaps I need it more than I think I need it. My medication directions are take as needed. My PTSD puts me in a very black place that is when I need it and I have not felt like I have been there so I haven’t taken any. I guess it’s time to talk to my other doctor about what I should do. So this being said to you, I want you to know you are very much alive, you have made it this past year we all have. The past couple of years since I got a fib have been hard on everyone with Covid, etc. we had lockdowns we had losses of people we love. We have come down with new illnesses. These are not normal time and you are not a normal lady you are a warrior.
I believe there’s a reason we are still here when others are gone. We just have to figure out why we were saved. Big hugs. Don’t forget you’re not alone out here. All you have to do is click on Health unlocked and we are here for you.
Delighted to hear your steady recovery continues Dawn. I will be following your updates with interest.Thank you for your PMs of encouragements in my particular situation they were much appreciated and I send best wishes for your recovery to full health, Tom x
I feel that we are family out here and even though we don’t have the exact problem the same way we understand each other. I have a long way to go and it wasn’t my imagination. I’m still not feeling all that great although today I feel wonderful. At my follow up, don’t know if I had mentioned it, but I have a safety switch in my pacemaker and it was on. Evidently if I give an alert when they are monitoring, they have the opportunity to put it on if needed. So somehow it ended up on end because this is such a new pacemaker , it slipped by. It is not harmful, but it was somewhat like getting an Echo beat from my heart. It’s nice to have a great heartbeat. It gets confusing if you get two of them. So it was shut off and one of the issues I was nervous about is now gone. Wednesday night always quiet in my chest for the first time since my AV node ablation, etc., it felt really good. It isn’t that these things hurt, but heck yeah they make us nervous when we don’t know what’s going on.
Next month I will get another echo. I am waiting for the date now. My EP wants to see what is going on with my heart failure. He is hoping it improves because of the pacemaker, which I never thought was possible, but he says yes. Evidently there is an equation he will be checking out. I don’t bother with the numbers. My heart is truly in his hands, and I trust him. If there is a change for the worse, I think he’s changing some meds that I have been on not for heart failure, but for other things yet they also treat heart failure. He said they have new and better ones now. He is hoping to see an improvement. I feel a big difference just since Wednesday even since yesterday believe it or not. Perhaps the safety switch thing was doing more than they thought. I have also discovered not to skip my medication for my back. I have spinal stenosis and other problems. Once my heart gets situated and they can give me cardiac clearance then that will get taken care of. Evidently the pain may be causing me problems that I was not aware of today I took my med and my activity level that I am able to do shot. Lol it’s tough to get old when you have more than one problem going on. I have been cleared for the back meds but I was trying to keep things contained at least for now to just my heart stuff. My EP also suggested that I may need my anxiety meds more than I think I do. You would think that they would not want you taking a lot of things, but this is to show everyone that our anxiety or depression at Cetera evidently can affect everything. I don’t feel depressed and I haven’t felt what I considered anxious or panicked. I have PTSD and usually when that hits I truly know it because I am in a very dark place not the person you all know here. My EPs assistant said that they are paying more attention to all of this these days, because there have been unanswered questions that they are now finding are tying to the rest of our health, including mental. I was told we have a right to feel the way we do with all that we go through. I have a staff here that truly cares all about us not just fix the heart and that’s it. They don’t tell us to just suck it up. It’s just a fib. Now we all have to find a point where we don’t wallow but we don’t blame ourselves.
sending a giant group hug to everyone here to remind you we are not alone
Hi Dawn glad you're feeling so much better. I too had the pace and ablate recently. Pacemaker fitted end of September and av node ablate begining of December. Set at 80bpm to allow my heart to adjust, having been in permanent AF for just over 2 yrs and sometimes with a heart beat up in the low hundreds. After 6 weeks, the clinic put it down to 60bpm and although that was my usual heart rate before AF , it wasnt right for me. It was then set at 70bpm and it's been great. Only on the usual apixaban, no other medication and once my chest had healed from pacemaker insertion and groin from av node ablation, I've not looked back. Life us good and feeling normal.
hi there yes I remember you because you are the only other person I know that has the same pacemaker and you got it before I did. Mine was the day before Valentine’s Day. I was given a new heart so to speak lol.
You and I have had a fib almost identical I still have chronic flutter, atypical as well as heart failure, but I don’t really think of them. I just had my first real follow up on my pacemaker. Interesting I have not felt all that great still a little breathless, and a little nervous, because I was still feeling thumps especially early evening. I too, was set at 80 and this week they lowered me to 70 for a heart rate. An interesting thing was that my tech who is a very sharp young lady, happened to notice that a safety switch was on for my pacemaker. Evidently we have a safety in the event of a problem so that it keeps beating. With the safety on evidently I was getting doubles, and although I was told by her, it was not dangerous. I can tell you and her it was really annoying and a bit disturbing, not knowing what I was feeling. Because our pacemaker situation is so new and different. Even when I called the hotline, the doctor thought it could be my blood pressure and if it continued wanted me to go to the ER for an EKG. Because of the expense I decided I wasn’t doing that. I knew I was going to be seeing my EP within days. FYI. After phone calls were made my safety switch was taken off. I had apologies in the event that it had upset me. I don’t get visibly upset but yes I didn’t know what was going on. I thought thumping days were over. I got a bit depressed and upset and asked myself. What did I do? I had an AV node ablation. There’s no going back did I kill myself? Seriously, this is what I said to myself. Now I had an answer and I wasn’t crazy as much as I thought I was lol.
I am waiting for a call back. My EP wants an echo done next month. He wants to wait a month to give the pacemaker a chance to do some thing if it is going to. His hope is that it is actually going to help my heart failure. The echo will give him the equation as to where I am with it compared to the last one which may have been when my cardioversion failed even with three shocks in December. If my heart failure shows no sign of change. I have a feeling he may make a change in my medication’s. Right now the only thing I am on is metropolol as far as my heart. However, I have been on losartan for high blood pressure, jardiance for type two diabetes as well as my metropolol. I had asked him what he did for heart failure and he said it was medication and I am already on it but there are new and better ones now. This man wants to give me the best quality of life possible I can hear it in his voice, and before he even sees me, he is thinking ahead to be ready for me because I have been such an unusual case. Leave it to me. Do you remember the little song we had as children ? The words were something like one of these things is not like the other“. It would show some thing like four puppies, and one of them had spots lol that’s me. I was an only child. I have a very active imagination now they probably just blame my old age but I’ve always been like this. Lol it keeps me going.
Anyway if you hear from people on here, I do refer them to you as well. You are such a shining example you gave me the strength to proceed when I was not pro pacemaker. Now I know it was the best thing I could’ve done for myself. You took the scare out of that for me. Thank you.
fyi I meant to say the 70 feels really good. After my echo, he plans on putting it down to 60 if all goes well with everything else. He said 60 is the heart rate they like to have for us resting at night. Again as we go along, we learn more. When I was set at 80 I did not think I should go above that. I did not realize how our pacemakers estimate when we are active, no matter how little or how much. The 80 should be when I am being a lump lol I told the tech I’m going for my doctors degree. She said I have learned a lot and she’s glad because when I have to deal with other doctors I will have the knowledge . I have to be interested to really learn some thing. Obviously, this is my heart and I have an interest in it. As they say, knowledge is power. I don’t get caught up with numbers and many other things and I leave my medication’s to my doctor. If I have a question about it, I talk to him or his assistant and they have not done me wrong yet. I notice here many people seem to change medication’s on their own and have the pill in the pocket. However, I have no such thing. All I can say is right now. At this very moment, I am feeling terrific. I hope I don’t jinx myself lol please take care of yourself and don’t be a stranger.
PS my EP presented my case in Dallas recently. He told me this the other day, and I could tell he was tickled, even though he is a quiet, humble man. He said they were in awe of everything about my case and they have invited him to train the EPs in Dallas. That will mean more people with problems like you and I will have the opportunity to get the help. I don’t know if they told you we are pretty special. 😊. I am not saying that from a big headed point of view. I giggle when I say that. I’ve been hearing it since they implanted the pacemaker and even the tech didn’t know much about it. Lol I never think of myself as special in anyway, so that’s why I always laugh at it and thought they were teasing me. It sounds like we have opened the door to others for home. All the other pacemaker modelswere unable to help. If they want to use me for a crash test dummy, I don’t mind.lol you never know this procedure might save someone we love
To be honest, j hadnt realised that I had anything special in the form of the pacemaker until you pointed it out!. You've had much more to deal with anyway as I dont have heart failure. I do have hypertrophic cardiomyopathy but that hasnt caused me any real trouble to date, other than it's probably the culprit for the AF apparently. I hope that you continue to improve and feel better. Such clever technology these days. I use the app on my phone which keeps transmitting all the time that I have bluetooth on and constantly can feed back to the clinic.
When I saw my EP a few weeks back he asked me go send a transmission ,so he could check how it was doing. I got back tk the car and set the app on my phone to send transmission and while I was driving home it did just that, all very clever stuff.
Take care Dawn and continue to improve. I know it's a huge step that not everyone decides to take but I'm certainly glad that I did. Sue
Hi Again. I tend to ask a lot of questions it’s probably from my law-enforcement background. It doesn’t matter who you are. I will ask you what I want to. Lol it’s not a lack of respect it’s me wanting to know when it’s a need to know basis I know when not to ask lol confusing isn’t it ha ha. My heart failure only came up when we were discussing my pacemaker I believe it began around the time of my failed cardioversion. It makes me wonder which came first and whether or not that was the reason my cardioversion did fail where the first one felt so good even though it was short-lived. The knowledge of now having this, besides the fact that my doctor was brilliant and gave me the answers to questions I had not yet asked, what is the reason I went with the pacemaker and settled down about it. The support on here was amazing, especially YOU who happen to have the same pacemaker that I do, which is very unusual. You had been where I was going. You don’t know what a difference you made, because I had been so against a pacemaker for some of the silliest reasons. You took the fear out of it for me and I will be forever grateful. I was told by many people not just on here. Oh, a pacemaker is nothing People just get right out there and live life like nothing was going on etc. oh that’s easy for people to tell me secondhand but you told me while you were dealing with it. I’m not sure I will ever fully understand what the HIS pacing at Cetera really means And why we are so different that we needed this pacemaker but to hear that a major place like Dallas is asking to learn this is pretty amazing. I don’t know all the history but I know either Houston or Dallas has done some major heart surgeries, etc. so for this to wow them, it must be big. Just think you and I are like the first man on the moon one small step and soon more people will be able to be helped. That’s why I always believe it’s really important how each one of us treat each other‘s one person can make a difference. I learned that during my career, and there is nothing like knowing you made a difference to someone. Well, I could keep saying thank you all night, so I am going to leave you alone for now. Next step for me, is my echo to see what my heart failure is up to these days.
You are very special not just because of the pacemaker you have ❤️🥰
Oh Dawn, you well may beat me but trust me, I also ask lots of questions, always have and never take anything unless I know why and what. I took the dreaded amioderone for 6 yrs ( well monitored) and had to do a lot of weighing up to do that. I had very symptomatic AF which nothing else would hold and with that decision I got more or less 6 yrs of relief until that became ineffective. That again was a huge decision to make. However for some reason, I never queried which pacemaker he was going to use. I queried the fact that he was doing a single lead and most appeared to have a 2 lead and he explained that I didnt need a 2 lead because my heart is pumping well and I solely needed it for the AF. I'm wondering if this pacemaker is already being used more widely here in the UK? But I'm going to find out now. 🤔
I am pretty sure it’s been used longer in the UK because they had to get FDA approval here. The fact that this pacemaker is getting the attention it is in Dallas also tells me it’s still pretty new. I would’ve thought it would’ve been in one of the big hospitals in Houston long before now. Sometimes I also wonder if just like big Pharma if there are things going on with pacemakers, and other devices where one is pushed before the other. I had a Biotronik loop recorder. My doctors are very well respected in Florida with the arrhythmia center of South Florida. Once I got to Houston, I could not believe the snobbery and attitude about my loop recorder to the point. They never started getting it monitored. They let me know they didn’t care for working with that company. possibly that was the day I should’ve left and found another doctor instead of putting my life in the hands of someone that didn’t care what he was holding. If it was not for a doctor like I have now, I would be so jaded after what I went through in Houston. Thankfully, there are more like the one I have done the one that let me down.
it’s been great reading your post and all the comments. I too have just gotten the pace and ablate procedure 2 weeks ago. I must admit I’ve been nervous knowing I’m dependent on a device to beat my heart. I’ve had 2 failed ablations and 2 failed cardio versions. A eighteen years of symptomatic AFib my EP and I decided I had enough and it was time for me to find some quality of life. I know I’m at the beginning stage of healing with some incision pain and some odd beats but fingers crossed it all gets better. I hope you keep writing about your journey because it’s really helping me . I wish you all blue skies ahead and any recovery suggestions would be much appreciated
Gracey I am right there with you my AV node was done on 27 February 2 weeks. Earlier was the fitting of my pacemaker. One of the reasons I want to share about mine is because unknowingly I got a very special pacemaker I didn’t even know I needed one but thankfully I found an amazing EP and for whatever the reason he came into my life and probably is saving it as we speak. Regular pacemakers could not have helped me. To show you how new this is he just presented my case in Dallas and they have requested that he come and teach the EPs there. He said they were in awe of my case, and they want to help more people. I’m not sure, but I think that’s very special for them to ask him to do that. He is a quiet and humble man. I was very glad he shared it with me. I believe he is going to become quite well-known. He is young, and only 14 years as a doctor, but he thinks outside the box and he is passionate about quality of life no matter what our age. He doesn’t believe in repeating failures. He did not do my ablations. By the way, they do not fail what fails to happen is getting the right spot. My ablations are holding strong even now. It has been explained to me that even a millimeter off will keep the ablation from doing what it needs to do, which is block, the erratic electrical short or whatever they call it lol I called an electrical thingy. I’m not a doctor. My first two worked for a year and a half and I forgot I had a fib. Unfortunately, when I came back, it was with a vengeance. The doctor that worked on me may not have made a mistake, but he did abandon me with a heart rate in the 150s, which I am told there is no doubt that is what led me to heart failure. Right now I’m trying to be so grateful at what is going on for me that I can let go of what I feel towards him. Part of me wants an attorney, but perhaps all these extra good things and my new doctor came to me to make all of that bad stuff go away. I had a heart rate in the 150s from April of last year until October 2022 when I had my first cardioversion. It failed after 3 1/2 weeks but oh what an amazing 3 1/2 weeks that was. It was the first relief I had had since arriving in Texas. October of 2021. Other mistakes also happened, including take me off the wrong med leaving me on the useless one. Right now I need all my energy to do good things and have my heart be as strong as possible. Sometimes you have to let things go.
The procedure a year ago this month sent me in a downward spiral. I could not walk across the kitchen without crushing chest pain, breathlessness, nausea, and more with a feeling I was going to black out again like my first a fib event 2 1/2 years ago. This is how I lived until I found my new doctor why it took me so long is another story. I like to try to be upbeat, but I was starting to wonder why I even existed. I was a lump on the chair or the couch. I couldn’t even wash dishes and trying to get to the bathroom was exhausting. I wanted to cry anything I tried to do was almost impossible. I kept waiting to hear from the Doctor Who did my VO,M etc. and Houston but the call never came. I mention about how we all can make a difference to someone. The first one for me was our mail carrier who I would chitchat with on days I felt well enough to be on the front porch. She mentioned a local doctor her parents used long story short. I pulled up some strength and made a call and it was one of the best calls I have ever made in my life the Cardiologist wasted no time with me. He met me Monday on Friday. I was having a cardioversion . That was the first one and it worked. I woke with a smile I could think and I had an 82 heart rate something normal for the first time in a very long time, and I felt it in my body and my brain. I had gone into the hospital in a wheelchair , I walked to the car that afternoon. OMG I felt normal. Unfortunately 3 1/2 weeks later it went away as fast as it worked. This time I met with my EP for the first time. He was going to handle the cardioversion plan to put me on medication keeping me in the hospital for five doses in the ICU. Unfortunately, the cardio version failed so the medication was canceled because it was only if I had become NSR. This is what got me two pace and ablate FYI the digoxin failed on me twice if I didn’t say it. It was doubled, but then it failed a second time within the month. When we were speaking about the pacemaker, I was told I had the beginning of heart failure. Just so you know, a pacemaker can actually change heart failure for the better. From what I can tell, the sooner you do with the better to give your heart a rest. My doctor had stated to me that both your heart and you have had enough he was right the both of us were exhausted , that’s why I had heart failure starting 150 beats plus from April until January was too much. I have no regrets about the pacemaker. The new one that I have is quite the tech thing. If I didn’t mention it, it is Bluetooth enabled. They can monitor me 24 seven and I can call them on a hotline 24 seven. If something comes up, they will notify me and have me send a transmission right from my phone from my pacemaker, isn’t that crazy. I had asked to see if I could get a phone charger and Wi-Fi put in at the same time lol my doctor actually smiled and the text said I could but it would cost extra. Lol I am just surrounded by the most wonderful people.
In regards to healing Gracey I was told 6 to 8 weeks before I go reaching for things, etc. no swinging your arm around or picking up things more than 10 pounds this is because the leads need to become healed inside, so they don’t pull out. The body builds a type of cocoon over foreign objects. First it tries to get rid of the object that is when we might feel pain, but then it accepts it, and it will cover it up, which will keep it from pulling out. anything above the shoulder with your left arm is not a good thing, so no lifting weights or bodybuilding lol Overall it can take up to six months for your body to accept everything that’s been done it’s trauma. There’s your heart minding its business and some doctor goes poking things into it. Lol so the heart is ticked off and a bit grouchy, and will let you know. I had quite a bit of aching in the middle of my chest I was concerned because every time I got an ablation or any type of procedure I would get pericarditis. This time I think I got lucky if there is any still in there it will show up in my echo next month but I’m feeling much better now. I also still have some soreness around my left shoulder and my incision is a little bit itchy still. The doctor said to make sure to put padding of some sort beneath the bra strap. They actually sell fancy ones on Amazon lol. The most serious thing to watch out for is making sure the incision stays closed and clean. Anything gets in there and they have to redo.
Hi Dawn from TX - This is Michelle from Galveston. I had my 3rd ablation and a pacemaker done at Houston Methodist just a week ago and have slipped out of rhythm as well as thinking I was having a full blown heart attack the other night. Unfortunately, this was the evening after my first virtual "look see" re the pacemaker wound and the night before Good Friday. Not easy to get help without an emergency room, which my husband and I have been trying to avoid, as I'm roughly 57 miles from Houston Methodist, and not anxious to go back to UTMB before consulting my regular internist or "someone". Apparently I'm back in afib, and the current protocol has left me without the beta blockers to calm everything down. I'm also on the Azure Pacemaker, which is a "cross my fingers and toes" kind of thing, I wasn't really prepared for this direction.
As a side note, this third ablation was a lot more extensive than the other two, and a bit unusual as he did work on both left AND right atria, and this was what they call an "alcohol ablation" where they use radio frequency and attempt to burn what they can't get with other means, as the first and 2nd ablation didn't really cut it.
I'm responding to you (which isn't my usual mode) because we are the same age and sex, have the same pacemaker implanted and it seems we're in the same time line, though I do not know your af history. Good luck and please let me know if there's anything else you can share information wise, as apparently you're a couple of weeks further along than I am on this journey (ps, any other ablations prior to the pacemaker implant one?).
Hello Dawn what a great description of your procedures you have given and I am so glad everything has gone so well for you. I also went for Pace and Ablate last year and had the Medtronic Azure pacemaker fitted and I can honestly say that it has been the best thing I could have done. I'm off all meds except for blood pressure and anticoagulant and I feel great now. Like you at my six month check up they turned on the PM to be able to follow the needs of what I was doing and ,after a slight hiccup of my brain realising this, it's wonderful to be able to live and sleep once more without the constant worry of AF episodes.
Thank you for the kind words. I write like I speak, which not everyone appreciates lol. Sometimes I can really babble. I don’t quite understand about it your six month check. Turning on the p.m. I had it fitted on Feb 13. On the 27th they did my AV node. It was all up and running in those two weeks. Other than the soreness of the incision and the ache of the ablation. It was not all that bad. Not knowing things was my biggest problem in the beginning until I asked questions and learned more. My heart rate was initially set at 80 on the 27. The other day it was changed to 70 and probably next month if all goes well it will be down to 60. Because of my tachycardia even the dropped to 80 was a big one after being in the 150s but honestly I had a little bit of dizziness for about a week, and then I was fine. I had it explained to me about when my heart rate went up that it was because my p.m. anticipated it when I was doing some thing I had been under the impression it was supposed to stay on 80 or there was something wrong lol, it was also discovered the other day someone left my back up switch on. If you didn’t know we have a back up switch and while they monitor us if something comes up, they can put it on so that we don’t miss a beat,. lol so we have protection. That was one of my big issues about a pacemaker was what if it stops what if it breaks down. I am very sensitive to feelings in my chest so I was feeling thumping and I thought it was a fib again or my atypical flutter. It turns out it was because of the switch. It’s not dangerous it didn’t hurt anything, but I was feeling it. I don’t feel it now. By the time I got home Wednesday night I can’t believe how much better I felt. Not knowing can be scary. I believe you can appreciate that like I do. We have had so much go on.
My EP who is a very humble and quiet young man, told me the other day he had presented my case while he was in Dallas. I’m not sure where he was or for what but I could tell he was excited because they have asked him to teach the procedure to the EPs there so that they can help more people like me and probably you too, because evidently this pacemaker is not for everyone, and the other pacemakers are not for us. We have certainly been gifted with the timing of the Azure. I’m OK.
I don’t know where you are if you have 24 seven monitoring and a hotline also like I do. I called the hotline a weeks ago. I wasn’t even sure what it was all about but it’s actually situated in the hospital that I go to where my EP works and is the Director of the EPS there. My Cardiologist is at the sister hospital 15 minutes from my home so I feel like I’m in a really good hands. The other one is an hour away. Anyway, when I called, I thought I would talk to a tech. I was simply going to ask if they were picking up anything strange on their end because they could look at me. When I said why I called, I had a doctor. Call me back less than 10 minutes later. I had no idea this is how it worked. I am just amazed at the treatment and wonderful people I have in my life for all of this. I moved here from Florida a year and a half ago and I had great doctors there also. I never felt that I was unlucky or lucky in life I don’t know if the real word is luck. I want to say blessed now because it’s special. All I know is I am alive and as I write to you, I am feeling very good.
Oh hon I am far from a hero, although you have many people on here, who are. My one suggestion is taking one day at a time. That’s really all we know we have anyway. When things happen it’s like baking one ingredient at a time if you tried to dump everything at once you’d have a big mess. It’s the way I do everything. I had a friend complain about doing laundry. He broke the whole day chore down abouthow he had to sort it and put it in the washer and put detergent and bleach etc. then named his room today 3 boys and how each had a uniform and socks etc. I was exhausted listening to him. I was trying to be nice but I was aggravated with him for whining. So if we stop and think about our health with a fib, it could be like doing laundry like my friend does. We just get exhausted and annoyed and scared. If it will do what a fib wants to do when it wants to do it. You can sit there and wonder and question things to death but it’s not going to help you. Even if you know when it’s coming what can you do but ride it out like being on the roller coaster you decided you hate being on. You still have to stay until the ride stops.
A fib meant nothing to me how I might’ve heard of. It but never paid attention to it. Now heart attacks I know because it’s been in my family. I never heard of this. Horrible thing called a fib that has no cure. I never saw it coming the night. I blacked out and hit the concrete floor face down or knew that that could happen twice in a short period of time, when I was home alone as usual. I have always taken care of other people. That’s why I picked law-enforcement. I wanted to help people who couldn’t help themselves. I never thought I’d be one of those people who didn’t even dial 911 for herself.
The reason I say all of this is because what I think we all need to do is learn about it not all these numbers and things that we have no need of knowing because we are not doctors etc. I don’t really care about some of the things I see quality of numbers etc. I’m not a doctor. The doctor knows what these mean and being able to “it doesn’t mean you understand it I’m not a parrot I need to understand. I love my doctor, because he speaks to me not at me and, he really make sure I get it. the tech I work with is the same way. When I asked her about the safety switch they had left on by mistake on my pm . First, she said I’m not even sure I should explain it to you but she said I know you like to understand and it’s good to know. That way if and when I have to work with a doctor, I didn’t know before I can have a sensible conversation. Because everything about my pacemaker is so new even my tech has to make phone calls. She had to do that about the safety switch, which is not dangerous. FYI. The only time I get nervous is when I don’t understand or know something. You have to make a phone call. You have to ask if it’s that important to you. I thought because my p.m. is set at 80 that it stays there. When I hit 105 it scared the heck out of me. By asking I learned that it fluctuates with my activity and it’s supposed to go up and down because that’s what humans do. Lol as my IEP says my heart is like everyone else’s now.
I think because it was my responsibility to get information in my job all the time and to sort things out that this is why I do this now with my doctors and anyone else. Some people probably feel like it’s the inquisition lol. I am not nosy I’m the last one to ask someone personal questions I’m a bit of a need to know person when it comes to personal life. I believe you will tell if you want to.
I think many of us I want to hear do not know enough yet, so we panic and it’s good that we panic here with people who will answer you to the best of their ability and share so you are not afraid. We don’t pretend to be doctors I don’t think people with a fib should either. I think the one reason I am being successful know is that I follow directions or a question them. Anyone can make a mistake even your doctor, so it doesn’t hurt to ask them but please don’t just ignore what they tell you to do. Our doctors are not just doctors. They are either a Cardiologist or even hire an EP. My doctor has about four different degrees an EP these days needs technical knowledge besides MEDICAL. Look at the equipment they use look at the equipment they put in us and control at the touch the button. Unless you can do all of that listen to your doctor or find a new one, so you can be here with the rest of our family of afibbers
I'm in the UK Dawn and things are quite different here with the NHS, which we are so lucky to have, and I have been so fortunate over the last three difficult Covid years to have been able to have the Pace and Ablate procedure. I am lucky that I have not suffered heart failure like yourself but just a 13 year life of very extremely symptomatic AFIB. I could not face endless ablations that had to be repeated and as I had come to the end of medications which would work and age is against me I agreed to P&A. The first three months have been full of odd bumping in my chest and one full day of flutter but the last three I have been returning to almost like I once was minus the ageing which one accepts as to be expected. So take heart I am sure your impatience at getting better will be rewarded and things will settle down for you. All the best 😍
Honey you have had it much longer than I have. It will be three years in October for me. I also have chronic a typical flutter and pacemaker does not necessarily stop those just so you know. As far as the heart failure honestly I did not know I had it because the symptoms are the same for just about everything from flutter to a fib to failure. Only our doctors and testing can separate them as far as I know. I don’t make things easy because I kept flipping from one to the other the Heart failure just came in to play after my failed cardioversion Christmas week. It was because they had done a TEE and other testing. I have had them often enough since October that it was easy for them to see where it started. My heart is exhausted. It was running 150+ a minute just think of it like a car. Something’s Gotta give eventually. I had the pacemaker in within a few weeks so that was able to get my heart beginning to heal. That is what my doctor is hoping for because yes, that can happen you don’t necessarily keep getting worse. Again today I am feeling great. Since Wednesday, I followed my doctors advice, taking the pill for my back, and I actually had a pretty full day today not full to most people, but it was to me. We just got home and I am exhausted and ready for a nap that being said, I had no pain I had a great day. my AP has stressed. I need more rest. I am learning to give into being tired like right now. My dog and I are ready for a nap lol.
I noticed there are people like you that have a fib for such a long time and then someone like me where nothing seems to work, and I seem to go downhill from day one. I told you the ablations worked until more afib decided to show up. The problem with afib is it does not get better. It might get quiet. But that is usually temporary. I hate saying that because there are exceptions, but I think people deserve to know the normal pattern of it, so they are not shocked and looking for a cure. Many of us till others with grateful for your afib free days. When you have a bad day or time of it, keep in mind, you most likely will get more good days again. We are all so different. Even your doctor may not know for sure. It’s like putting a dot of color on 10 people. Some turn pink, some turn blue some turn purple even though the daughter of color was the same one on each person. That’s a fib doing what it wants.
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Pacemaker update
