Atrial Fibrillation (AFib) Support Group

Atrial fibrillation (AF or afib) is an abnormal heart rhythm (cardiac arrhythmia) which involves the two small, upper heart chambers (the atria). Heart beats in a normal heart begin after electricity generated in the atria by the sinoatrial node spread through the heart and cause contraction of the heart muscle and pumping of blood.

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Heart, Blood & Circulation
/ Atrial Fibrillation (AFib) Support Group

My experience with ablation

tomorrowsdream
tomorrowsdream
I just got home from 4 days in the hospital...four horrible days. If you don't want to hear the bad things about ablation, then please don't read any further. I would never have it done again. If I was younger and did not have persistent A-fib it would be different maybe...maybe. I can out of this surgery feeling like a was run over by a two-ton truck. Who knew you could feel so much pain from it. I also couldn't breathe....One of my lungs had collapsed, and I'm clueless how this happened. I couldn't tolerate the med..Tikosyn, and that's the last of the meds that work. The line's on my EKG were getting longer and longer on small doses and could have sent me itno a fatal arrhythmia. I came home yesterday-after also having hemorrages from both groin sites (probably the past coumadin in my body), had oxyten delivered, and I'm worse off after having gone through this. If you can control your rate...if you are not the perfect candidate, I would never tell anyone to do this after having done it myself. I had 2 IV's...a arterial blood gas line (which hurt horribly), could not stand the pain of a potassium drip (and I'm no baby-I've been through open heart surgery, and I swear this was worse). They thought the meds caused shortness of breath, so it was the 3rd day before anyone ordered a chest x-ray and found the lund collapsed. If you are on the fence about ablation...if you have had A-fib more then a year, what they don't tell you is chances are not good you will stay in sinus rhythm. The only med left is amiodarone and I absolutely refuse to take that super toxic drug. So, that's my story folks. I am going to be living with this..maybe even unplanned oxygen, which I never wanted, but I am at least alive. If you are told your chances are 50/50...please don't try it. The odds are not good for you.
All my best to my friends here,
Dee
RN52
RN52
I did have persistent afib and I am not giving anybody false hope. I just thought that this was a site to offer support and encouragement. I keep saying that ablation is a personal choice. I do not work for an EP or get any kickbacks for people that get ablations. I was told that the longer that you are in afib the less chance that there is for a successful ablation. I was lucky and I realize this. Let's get our terms straight by the way. Paroxysmal afib is afib that comes and goes. You can have it for years. Persistent afib is afib that is always present but is has been going on for less than 1 year. Permannet afib. has been going on for over a year. I agree that there was less of a chance that your ablation would be successful but you cannot tell me that the pneumothorax or the bleeding from the sites is a common experience. I truely am sorry that you did have such a bad experience and was not personally attacking your post.
pacyetep
pacyetep
This is healthy debate. Everyone should be questioning their EP with their concerns. Everyone should be looking realistically at their odds for success and complications based on their overall heart health, type of afib, length of time you've had afib, atrial size, etc and discussing with their EP. Also, each center has a different definition of success. If you are concerned about your upcoming ablations, discuss with your doctor and get answers. The fact of the matter is, we are all anxious about our afib, the many and conflicting treatments and information out there, and the varying experiences out there. It is hard for us to do the math because we are too emotionally involved with our afib and the fact that we are the ones having to make a decision like this that is not simple. My gut and my EP tell me that ablation is not for me at this time. This science is evolving rapidly and since I am not symptomatic, have probably had afib for some time (persistent for almost year at least), have a larger left atrium... my research has told me the chances for the kind of success on my terms are slim. With Pradaxa and rate control,my chances for stroke or heart failure (which incidently,is reversiblewhen it is the afib type) are very low. I believe the time will comewhen peoplewith afib that are not great candidates now, willbe inthe future. There is not even agreement on the 1 year decision times.Some say 2-3 years. One last thing... if you like me, bounce back and forth in your decision to have an ablation based on one or two posts, you DO need to question yourself about your gut feeling, deal with it, get more information from your EP, make an informed decision, and run with it. Now, let's see if I can follow my own advice.
RN52
RN52
Thank you Petey! I couldn't have said it better. I am not an advocate for ablation. I just wanted to share some good news. I am simply letting people know that it worked for me and that it essentially gave me my life back. What works for me isn't necessarily what will wotk for you.
CLane
CLane
tomorrowsdream: You are not a debby downer and I am so sorry ablation was not successful for you. I, too, wished I had not attempted it. I have had 2 unsuccessful ablations. After the second ablation, my afib was and still is very symtomatic, worse than before. Since being put back on Flecainide, the afib still persists but is less symtomatic on the drug. I had a pericardial effusion post second ablation due to perforation of my atria which resulted in cardiac tamponade. The risks of ablation are very real. I agree. If you are not the perfect candidate, the decision should be weighed very carefully. Many are helped with ablation so it is always worth visiting the option but the decision is a big one. My EP is very enthusiastic about trying another (#3) one. My Cardio said "no way!" He said you already had a major complication and he strongly advises against me trying again. I, too, intend to find ways to deal with it and just have the best quality of life possible. I feel very lucky to be alive and thankful. Take good care - Carrie
CLane
CLane
Just one more thing to add -One of the most important facts I learned in my experience with ablation is that it is not only important to educate yourself on how much experience your EP has with ablations (how many) but if the EP is highly skilled in handling complications (for example, pericardiocentesis). One never goes into decisions expecting a complication but it is good advice to ask EP how much experience he has with handling emergency procedures such as tamponade. My EP has done a large amount of ablations but he impressed me most when he was able to calmly and expertly perform pericardiocentsis :)
RN52
RN52
Any surgery/procedure has very real risks. We as health consumers, need to educate ourselves on these risks before considering having any medical procedure performed. I do not have a problem with anyone sharing their story, good or bad. It does help us in making informed decisions. What I do have a problem with, is a member deciding who would be a good candidate for an ablation based on if they are in paroxysmal or persistent afib. There are so many other underlying factors that need to be considered in determining if an ablation would be a good option for anybody. These factors need to be assessed by a doctor and not determined by an individual that had a bad experience. My father is 85 yrs old, had quadruple bypass surgery, CHF, emphysema, and paroxysmal afib. I would never consider him to be a good candidate for ablation. On the other hand, I had persistent afib for 6 months. I have no underlying problems at all. I was put into NSR by taking amioderone 1 month before my ablation. I ended up having a second ablation which was a cryoablation and have been in NSR since that time. I truely do not even like to post and I hate confrontation, but some things just need to be said.
CLane
CLane
I agree RN. There really are so many factors one has to take into consideration for any surgical procedure. There isnt a single procedure that exists that doesnt carry some risks. Each and every body, every heart, has its own unique set of circumstances and characteristics. For example, I was told the atria are very thin and my Cardio stated that my atria may be particularly thin, which may explain my complication. I believe everyone should have the chance at a potential cure with ablation because it is an exciting possibility. However, I told myself I would try up to two ablations. I have a high deductable since I am self employed and ablations are expensive. I dont feel it was money wasted since it was a chance for a potential cure but was disappointed that my symptoms did not improve. I felt confident with my EP and he was very honest with me on my last visit and told me that it may take several more ablations to achieive a normal rhythm for me. He was very honest with the first ablation and told me only 70% are cured with 1 procedure. I believe a person has the right to be optimistic about success with 1 procedure but should be realistically accepting of the potential for first time failure or even 2nd time failure. I truly thought I would be a 1 time success but know it is my time to accept and proceed with living with AF. There are some patients I have spoke to in my EPs office that have had 6 RF ablations and still plan to do more. One guy said, whatever it takes :) How long has it been since your (2nd) Cryo ablation? Are you off all medications now? I am interested in trying some other anti-arrhythmics. I have never taken Amioderone. It was never offered to me. I am a self pay on prescriptions and Flecainide is relatively affordable. ($75 dollar a month).
CLane
CLane
I should clarify that though I wished I had not attempted it ( hindsight is a wonderful thing), the reality of it is that if I had never tried, I would have never known. Sorry for the conflicting statements. :) My mind is all over the place today. The chance was worth the risk but now that I took my turns at it, wish the outcome would have been better.
RN52
RN52
CLane, thank you for your comments. I appreciate your support. It has been almost 6 months since my cryoablation. I see my cardio in December and hope to stop meds then. I have already stopped my verapamil and I'm praying to be done with the multaq and coumadin after my cardio visit. I felt that I was critisized on this site for giving false hope when all I was trying to do was deliver a positive message. I think that it is just human nature to share bad experiences more than positive ones and was simply trying to offer some hope and encouragement. We do need to hear the good and the bad to help us make good, informed decisions.
CLane
CLane
Good Luck RN. I hope that you can start 2012 medication free :) Yes, the good and the bad experiences do help us make informed decisions and give us material to talk over with our doctors. Sometimes I feel like a person who has played the lottery and wants her money back because she didnt hit the jackpot :) But I know that each decision is taking steps forward, even if the outcome was not as I had hoped and the direction not one I intended. Thank you for letting me share some of my story and again, good luck to you and take care.
RN52
RN52
Thanks for the well wishes. I appreciate it. I would not even consider amioderone if I were you. The only reason I took it even short term was to put me in NSR so that I had a better chance at a successful ablation. It is a very toxic drug and should not be used long term. I took it a total of 2 months and I would not take it again. I knew the potential side effcts before I took the drug. It did the trick, but never again! I really didn't think that I would have another ablation but the cryoablation offered something new, so I gave it a try. I am now thankful that I did. I know in the future there will be even better technology. I wish you the best, CLane.
tomorrowsdream
tomorrowsdream
Let me put something in perspective for you that apparently you are missing RN52. For someone who doesn't like confrontation, you are sure fast to jump the gun...especially after being warned not to read this if you didn't want to hear my experience. I don't personally care if you have 10 ablations, because the ablation is NOT the problem here. The collapsed lung and pleural effusion that left me unable to breathe are the problem...and I sure didn't sign up for them. Please don't give me things happen, because some things can and should be controlled. I should have been taken better care of after the ablation and not left unattended on my back for close to 12 hr...I should not have to rely on oxygen to breathe...and this isn't about the ablation it's about the problems that came with it. You know what...I'm really tired of you. Is there a block button on this forum? Hard for me to believe you are a nurse...oh wait you are probably the one I had in the hospital that was to busy to do her job:)
RN52
RN52
I pretty much expected this kind of a reply from tomorrowsdream and that is OK. I do not have to agree with your opininion,
nor you mine. I respect your right to express yourself. I will not stoop to childish remarks or namecalling. I really do not know why you are so offended. You have been telling people who would and would not be good candidates for ablation based on if they are in paroxysmal or persistent afib. You have also tried to pass off your complications as the norm and they aren't. They can and do happen but aren't the norm. You do not have to worry about blocking me. I am through commenting. I just wanted to share a positive story to offer hope. I have done that. Mission accomplished. Good luck to all dealing with afib!
marikay234
marikay234
We are here to share our experiences, both good and bad, and most importantly support each other.
I appreciate tomorrowsdream reminding us that there can be bad outcomes from ablation, and I am so sorry that it happened.
I appreciate RN's comments to put ablation into perspective and sharing her positive experience.
We each have to weigh all the pros and cons for our individual situation when we decide on any treatment.
Tomorrowsdream is understandably angry and upset but RN is not responsible.
I hope that Tomorrowsdream and RN can agree to disagree and move on. You are both valued members of this group and I enjoy and value your input.
CLane
CLane
Marikay- What a truly graceful post. Each message we receive in these posts makes a difference and adds perspective. I can relate with the disappointment of ablations that were not successful and having a very scary complication myself, it made statistics more of a reality for me. Hearing the good and the bad experienced from real people, instead of numbers recited from doctors, really does put various treatment options into realistic terms. Everyone needs a place to express both their successes and treatment failures. The best we can do for each other is congratulation people's successes and comfort those who have not achieve success and are facing disappointments/failures in treatment of AF. The road is long, finding this forum made me feel I am definitely not on this road alone :)