Post Ablation Recovery – Need Help!!

To sayaboleh…….Thanks for your reply and I'm sorry I haven't replied soon. It's been a crazy week full of "out of town" guests for 8 days and it left me exhausted. The first thing about YOUR reply that caught MY eye was when you said....."It sounds like you were being cardioverted every few months and I am curious whether it was something you had requested, or prompted by your EP" I am now wondering if you have confused my post with another as I have NEVER undergone a cardioversion. 10 years ago my cardiologist diagnosed me with CAD and test showed that I had blockage, so I had two stents placed. The problem was essentially solved and I have seen him every 6 months for follow ups and lab work. When my PVC's increased and became bothersome to me, he had me wear a Holter which showed AFIB episodes. This was in October of 2018, he started me immediately on Xarelto and we discussed antiarrhythmics at that time. When first diagnosed, I did a lot of research about antiarrhythmics, both on Google and in the two AFIB support groups I had joined. What I read and what people had said about their own experiences with antiarrhythmics, I came away with a rather negative attitude about these drugs. I have severe panic disorder and just one of the "amusing" ways it manifests itself is in health anxiety (NOT hypochondria) and from personal experience, side effects of medications. My cardiologist is aware of this problem and it was his belief that I probably would not be successful with the antiarrhythmics, so he suggested I discuss this with an EP. We set up an appointment and while waiting for that, I had an echocardiogram done. I live in a rural area and we only have ONE EP that must cover 3 counties...….it took until late January 2019 to get an appointment. By this time, my AFIB episodes were getting more frequent and lasting longer. I was told I had paroxysmal AFib because the episodes stopped on their own. The EP discussed options, one of which was trying antiarrhythmics or ablation. He said he had read of my anxiety in relation to the antiarrhythmics, and believed that for me, an ablation would be the better choice. I talked with my cardiologist and he agreed. Many people in the support groups agreed. So I set up an appointment for the procedure which wouldn't take place until March 20th. So......from the point of diagnosis until the procedure, only 5 months had passed. I seemed to be doing fine on the Xarelto with only some minor spells of dizziness when I first began taking it. The AFIB was pretty quiet during the day but got pretty bad after I had eaten dinner and would last anywhere from 2-6 hours. I thought it odd that it began almost precisely at 8p almost every night and naturally I began to wonder if this was being triggered by my anxiety. I, personally, don't know of ANY disease that strikes at the same time every day! (For anybody who has managed to read this far into my "blog," I give you a lot of credit and my thanks!) The day of my procedure came and needless to say I was terrified. Even though I had previously been through a cardiac laparoscopy procedure for the stent placements, I think the idea of someone "burning" my heart was freaking me out. All went well with the procedure but apparently, I had a bit of a rough time coming out of the general. Nothing life threating, it just took quite a bit longer than "normal." But once I WAS out of it, I felt OK......well, as "OK" as anyone can expect. The next day as I was being discharged, I was told what to expect during this "blanking" period. Among the things I was told I could look forward to was a few days to a week of feeling short of breath due to the swelling of my innards from all the mucking about they had done. (My procedure took a little over 6 hours) I did, indeed, experience many of the side effects, including the shortness of breath, which did improve after a week. And it is at THIS point that I wrote to you folks because the shortness of breath did not go away completely. I am just now (June 2019) starting my third month of recovery and feel, at times, that I can't get a deep breath. I'm not even sure if one would consider that shortness of breath, as I can climb stairs and do yard work and take care of the livestock and not have to stop to "catch my breath." (At least, any more than any other time when you're working hard) Which brings us back to my anxiety. After that first week when the REAL shortness of breath stopped, which had made me feel very anxious, I kept trying to take one deep breath after another. Anybody who has tried that knows it's damn near impossible. I'm not talking about the kind of deep breath you take when the doctor is listening to your heart, I'm talking about the REALLY, REALLY deep breath that feels good and "cleansing." The more I tried and the more times I failed, the more anxious I became until I have reached the point I'm at now. Which I think is a rather unhealthy point of obsession about my breathing. I DID call my EP's office and had a long talk with his PA and we both concluded that since I did not have this problem until AFTER the ablation, it was almost a given it was my anxiety. The PA did order another echocardiogram, which I just had Thursday, May 30th. The very next day, my cardiologist wrote and said "everything looks really good. Have a great week-end." So.....while this WAS incredibly reassuring and my shortness of breath seems "less," I am STILL monitoring my every breath. I realize that many of you are rolling your eyes in exasperation about my stupid anxiety, I am asking if anyone out there who has had an ablation has ever felt this shortness of breath or a feeling of not being able to get enough air......or am I truly just doing this to myself? I am REALLY sorry for being such a pain in everyone's rear.....I'm alone and scared and have nobody to talk to about this. (Even my dog yawns when I talk to him now. How pathetic does THAT make me!) Thank you from the bottom of my wonky heart.

@rubywitch67 Hi there -- You're right. It was not you with the multiple cardioversions. I was indeed confused. I have since heard about someone else who was going to the ER to get cardioverted every month.... So there. Hope they have good health insurance! It is a very simple procedure really and over in a few minutes. I am not sure about a monthly frequency though - hopefully mine lasts at least 6 months. Yes, indeed it is very scary to have to deal with afib and other symptoms alone. I am actually feeling a lot better now than when I used to years ago when each episode would send me to the ER in distress. My symptoms were a lot more severe then and I credit the multiple ablations I've had with for the way I feel now when I have an episode, it is definitely a lot more tolerable. There was this EP who kept reminding me that 'Afib will not kill you'. Somehow I did not find that very reassuring. It does not matter what they are saying when your HR is running about 180 bpm. I think I know what you are referring you with the deep breaths -- I sometimes have trouble too. There are also times when I am acutely aware of every little sensation in my chest. I try not too focus too much on it and just go about my day - I feel so much better that way. I hope you find ways to distract yourself. I would say you're doing remarkably well if you can climb stairs and take care of livestock! All the best -- Mary

Hello @jeanniegirl,

I can only imagine how disappointed and frustrated you must feel! I sincerely encourage you to view this Q&A, where Mayo Clinic cardiologists discuss, "When Ablation Fails, What Then?” https://www.medscape.com/viewarticle/838526

According to Dr. Paul Friedman, “...there are patients in whom it will fail. In that setting, it comes down to three options—pharmacologic treatment... and surgical therapies. Often, we switch to nonpharmacologic rate-control strategies, such as atrioventricular node ablation with device implantation. This is extremely effective for controlling symptoms...it is acceptable for patients in their mid-70s and older because it essentially eliminates the need for pharmacologic therapy, with the exception of anticoagulation for stroke prevention.”

If you read through some of the posts in this discussion, you will see that it's important to seek treatment sooner rather than later, particularly if you are still having afib episodes while taking antiarrhythmic medication . That's because atrial fibrillation is a progressive disease, and if afib is not treated, patients can transition from paroxysmal atrial fibrillation to longstanding/persistent atrial fibrillation – the greater the severity of atrial fibrillation, the harder it is to cure. https://www.mayoclinic.org/tests-procedures/atrial-fibrillation-ablation/care-at-mayo-clinic/pcc-20384972

@jeanniegirl, for how long have you had afib? Is this your first catheter ablation?

Hi @rubywitch67,

I just wanted to tell you are not being such a pain in everyone's rear, and that it’s absolutely okay to feel bad for yourself or your situation – but more importantly, don’t forget to be kind and encouraging to yourself as well.
Even though managing a chronic condition or dealing with debilitating symptoms can be a tough journey, you are not alone. I’m so happy that you have chosen to be an active, participating member of the Connect community – we often feel like what we have to say is of not much value, but it is amazing what your shared experiences can mean to other members!
We all may have different causes of the battles we are fighting, but the battles themselves are the same, so I hope you know that you are in a good place to ask and get the support you need.

Kanaaz…...thank you for your kind words. This group has been a real life saver for me. When you have no one who understands even the basics of AFIB, let alone the medications and procedures required to control, manage or hopefully "cure" it, it can be very lonely and for people like me with anxiety issues, it can quickly become a daily nightmare. Realizing you are not alone in this battle is SO important and the peace of mind I've gained from being a member has been priceless. I really like and trust my doctors, but they so often talk "over our heads," I often come out of an appointment even more confused than when I went in and I'm not sure if they've answered my questions or not...….they most likely have, but it's lost in jargon I didn't understand. Which is why groups like these are of such vital importance to us lay people. I thank you and everyone who has taken their time to help me. Hopefully soon I will be able to help someone else.

sayaboleh….thank you! Your response was very reassuring, especially when you said you thought you understood what I meant about the deep breaths. You have been through so much more than me, I'm really impressed with your outlook. I think I said that from the time I was diagnosed with AFIB until I had the ablation was only 5 months! YOU are talking about YEARS of enduring AFIB and multiple ablations and cardioversion's. I am just beginning my third month post ablation and already my episodes are SO much less frequent, less intense and don't last nearly as long.....the relief I feel is sometimes overwhelming. But.....being the anxious person I am, I think "But what if my EP says it hasn't "worked." NOBODY has talked with me about that. I don't even know how they figure out if it has worked or not. Do they just go by what I say? Do they do an EKG, which is OK but those tests only tell you what your heart is doing AT THAT MOMENT, do they have you wear a Holter or event monitor for awhile? I know if it hasn't worked, they will discuss "the next step" with me at that time, but I wish I knew NOW what those "next steps" might be so I don't have to keep worrying about the "WHAT IF'S!" I know I should just take your advice and distract myself...….just be happy with the improvement, and take it one day at a time as I finish healing. Unfortunately, having anxiety disorder makes that more difficult. (And yes, I've been through years of therapy for the PTSD that has left me with panic disorder) I WILL try, Mary, I will try very hard to focus on the improvement rather than the negative possibilities. I will reread your post every time I feel myself slipping into anxiety...…….(((HUG)))

@rubywitch67 So glad you're slowly feeling and doing better. Actually the cardioversions are the easiest thing to deal with - I've had to deal with much more - open heart surgery, lung issues, etc.. BUT - they were all manageable and behind me and and it certainly could be a lot worse. I feel fortunate that I am able to do the things I like -- bake, exercise, hike etc. and only have to deal with the occasional bumps in the road (as my EP calls it) You raise an important question about how success rates are calculated for ablations -- there really is no consensus in the EP medical community (someone else can call me on that!) There is the blanking period of course of 3 months. Then you need to be free of sustained episodes (where you do not come out of it for days/weeks) for a year. Based on that definition my second ablation was a success, never mind that I will most likely need a third one either this year or next. Most of it really is based on how you feel and how the episodes impact your quality of life. My doctors are fine if I am in persistent afib or flutter if my symptoms are tolerable and my heart rate stays below 120 at rest. If you get a lot of episodes that come and go they might order a 2 week heart monitor called Ziopatch which will tell them what's going on. You are right that an ECG only captures for that moment in time and only helpful if you are not in sinus. BTW, my EP did not want to raise my expectations so he only gave me a 50% success rate for my ablations. Some will say that is huge - I thought it was dismal! The EP who actually did my ablations (mine was super booked up) said he would be happy if it lasted 2 years and it has been 3 months shy of that. So what's next? It depends of course. My EP laid it all out for me in an email and I will see him in a few days to discuss the 3 options he proposed. I suggest that you not worry too much and focus on getting well because anxiety and stress is not good for overall health. I know that is difficult if you have an anxiety disorder but good to hear you are going to try and stay positive. That is so important I think. Cheers and hang in there! Mary

I had an ablation 6 weeks ago. I'm experiencing palpitations which my EP says are PVCs. He also says they are not dangerous. How do I tell the difference? My bp has increased significantly and I'm having light right side chest pain I didn't have prior to the ablation. Thanks.

Hi jaqueela………..I have just entered the 3rd month of my "blanking" period from my first and only ablation, so I'm sure I'm not the most experienced person to be answering your questions. I CAN tell what it has been like for me and can reassure you that I have (and still am) experiencing many of the things you are. I had palpitations for years before I was diagnosed with AFIB. My cardiologist said they were actually PVC's.....essentially the same thing. If you had PVC's before your ablation, you know they can feel like skipped beats or a flip-floppy sensation....and I'm sure other people would describe them differently, but that is what they felt like to me. When I developed AFIB, there was no mistaking the difference in how AFIB felt compared to PVC's. Since my ablation, I still have some very minor episodes of AFIB, but they are SO much less intense than what I experienced pre-ablation. I also have a very occasional PVC and I can tell the difference immediately. You asked how can you tell the difference. PVC's (at least for me) where over quickly. Sometimes I would have several in a row before they stopped. When I had an episode of AFIB, my heart would race and pound and be so obviously out of rhythm and these episodes would last anywhere from 1/2 hour to 6 hours....non-stop. There were times my PVC's would last much longer, but, again, for me, they were nothing like the AFIB! The AFIB was terrifying to me. The PVC's were annoying. I think that was the case because I knew what the PVC's were and I had been reassured many times by my cardiologist that they were benign.....it took a year or so for me to accept that and just learn to live with them, but I'm going to go ahead and say that you will definitely know the difference between PVC's and AFIB. I think it is quite common after an ablation to feel a few PVC's while your heart is healing and your EP is correct telling you they are not dangerous. If your EP was concerned these PVC's, he would have ordered tests or had you wear a monitor......so I think you should relax and accept his reassurance. I think most of us who have just had our first ablation are overly vigilant about ANYTHING we feel with our hearts. Ablations are considered very safe and not "highly invasive," but that still doesn't mean our hearts (and us) haven't been put through the ringer! Before my ablation, I read on several support groups that many people said it was no big deal and they were back to running 10K's after a week or they were back at work full time feeling great or leaving on a 6 week cruise. While I was happy for these people, it made me terrified because at the end of my first week post-ablation, I still felt exhausted, the groin incision hurt like hell and the size of the bruise was shocking...….my chest felt like I'd been kicked by a donkey, my throat was SO sore I could barely swallow chicken soup and the day or two of feeling short of breath HAS improved, but I still have difficult getting a really good deep breath. I have spoken with my EP and he says all these things are normal. He says some people just require more time to heal. I then read some posts from people on the support sites that said it took them over 6 MONTHS to begin feeling normal again, which I found very reassuring. But let me add here that if there is ANYTHING you are concerned about, CALL YOUR EP'S OFFICE AND LET THEM KNOW! I held off calling about the prolonged shortness of breath until I was SO anxious, when the nurse got on the line, I just started crying! She didn't get angry at me, of course, but she did let me know that I had put myself through a couple weeks of terrible anxiety for nothing when a quick call to the office would have reassured me. So......don't be like me! If you're worried about something, have questions or concerns, CALL THEM!!!! Day or night! There is always a cardiologist on call you can talk to. You should have been told that your BP would be elevated by several points after the ablation and was also perfectly normal. Mine has increased. I keep forgetting to ask if this rate is now my new "normal" or will it go down when my heart has fully recovered. I have finally remembered to add it to my "question" list at my 3 month follow-up in 2 weeks. When you say your BP has increased "significantly," that is something you should definitely discuss with your doctor. What YOU define as "significant," could be well within the limits of a post-ablation increase, but instead of worrying about it, CALL. It's most likely related to your stress about it than the slight, normal increase. Chest pain is also very common post-ablation. I had some, but it was very minor and the pains came and went very quickly. Those have virtually stopped now that I'm this far along in the blanking period, but I still get the odd pain. As long as it doesn't last or present with other symptoms, it's simply your heart healing. But again, if you are concerned, call your doctor's office and let them know. Chest pains can also be caused by stress and anxiety, and for your peace of mind during this recovery period, it's important that you deal with the anxiety before it gets out of hand. And the best place you're going to get the reassurance you need is from your doctor. Please don't hesitate to call them. I can guarantee you'll feel better if you do. Here's wishing the very best for both of us!

@jaqueela I find sometimes the medical profession does not do a great job of telling patients what to expect after a big procedure. A little reassurance sometimes goes a long way. I am a big fan of Dr. John who is an EP who has first hand experience with afib. He does a great job on his website and I hope you find the following helpful...