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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tomorrowsdream 10/22/2011

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

yogacat 10/22/2011

I am upset that this was so horrible for you!! I was so hoping everythng would go well. I pray healing angels will be by your side now that you are home

missd12932 10/22/2011

I'm so sorry your abalation did not go well. Hopefully with time you will feel better.
May God help ease your pain.
Miss Dee

tomorrowsdream 10/22/2011

Yoda, I am beyond disappointed myself. I knew the chances of the ablation working were only 50/50, and I was OK with that..but my feeling is that before the ablation I should have spent a couple weeks on the Tikosyn to see if I tolerated it, rather then go through the procedure and find I didn't. I just don't do well on heart medications at all. I guess ending up on oxygen is what has bothered me the most...that and the lousy care at the hospital. I was in ICU and rarely saw anyone...I think nursing is not only way understaffed, they don't seem to have any bedside manner or care like they used too. I'm so glad to be home and out of there.

deleted_user 10/22/2011

I am so sorry that you had such a bad experience. I hope as your body heals and this is behind you, that you will get some improvement. Please take care of yourself. Joan

DeeMR11 10/22/2011

As I read your comment---- feel your pain.
Really sorry that you went through a nightmare experience.
Please know that other people care.
I'm praying that you'll feel better soon.
D

pacyetep 10/22/2011

Sorry you had the bad experience. I hope you feel better soon. I really appreciate your telling it like it is. I'm sure everyone appreciates your honesty.

Did they just tell you the ablation didn't work or do anything to improve your long term symptoms? Where did you go for the ablation? Was it a doctor that has done many ablations?

I have heard many people say the first month was tough, even when the ablation was successful. Also, that it takes 3 months for the heart to settle down.

We all hope you feel better.

Moysra 10/22/2011

So sorry to hear that things went so badly for you. I sincerely hope that your heart will improve and life will be better.
Moysra

tomorrowsdream 10/22/2011

Petey, my Dr. is a straight-shooter, and we have state of the art equipment. He came here from NY and has done many, many ablations. The fact that I have a very enlarged left atrium and am in persistent a-fib lessened the chances of it working. The only thing left is amiodarone and I won't take it for anything. I lost someone to pulmonary fibrosis, and it showed up 8 years after taking the drug. It's very, very effect, and very toxic, but I'm scared to death of it...so this is the end of the line for me. A pace maker does not get rid of a-fib and I don't usually feel the fib or flutter, so I'm just on Lopressor (have been for 11 years). There is no chance without being on a good arrhythmic that even scarring down the road will help. He was KIND enough to tell me I'm a failure...but my thoughts are "perhaps the drugs failed me" and I simply can't tolerate the heart meds. He is a very good Dr., but certainly not one you would ever go to based on personality for sure. My regular cardiologist, on the other hand, is the kindest person I've ever met, and I'll continue to work with him just to keep everything under control. My feelings are just that I should have been tried on the Tikosyn before the ablation and I would have been saved ever having the ablation, because I couldn't take it. It was on the verge of causing a life-threatening arrhythmia Thank you so much for your concern though, and I'm sure there are those out there in proxymal A-fib that are successfully treated, but ablation truly is not for anyone in persistent a-fib.

pacyetep 10/22/2011

Like you, I am in persistent afib with an enlarged left atrium. I am also essentially asymptomatic and have no other heart issues. I also have no idea if my afib started afew years ago because I can't feel it.

I wear my oral appliance for sleep apnea and take Bystolic for heart rate and Pradaxa for clot protection.

My doctor says that there is no gain (and lower odds) with an ablation and that my risk of stroke is higher due to ablation than with my Pradaxa, particularly since my CHADS2VASC score is zero. In addition, there are 4 or 5 things that go wrong over 5 % of the time.

There are those that tell me I am missing the boat by not getting an ablation, so I really appreciate your comments.

marikay234 10/22/2011

I'm so sorry to hear that things did not go well. I really appreciate your telling it like it is. We need to be reminded that there are risks with ablation. I hope that you will soon feel better, and not need the oxygen when the collapsed lung heals.
Sending healing thoughts your way

shantima 10/22/2011

I'm so sorry to hear about your experience. I was so hoping it would it would help. I hope with time things will settle down for you.
It concerns me though because I'm scheduled for an ablation at Johns Hopkins in January. I am also in permanent af for a year now. My heart is in good shape though and the atrium is small. I need to be on amiodarone for 2 months before however. Due to start it in 2 days. Have to get the maltaq out of my system first.. Now I wonder if I'm doing the right thing. I'm aware it might have to be repeated and I have a high pain tolerance, but my symptoms are so severe I have to do something. Now I'm questioning my decision.
Please feel better soon.

deleted_user 10/22/2011

I am so sorry to hear of your experience. Probably should not have read it today. Just came back from an ep to discuss rf ablation. I have had afib since January.

Your experience is quite frightening. My prayers are with you and hope you can get past this dreaful experience.

RN52 10/23/2011

I am so sorry to hear that you had a horrible experience. I hope that you feel better soon. I am also sorry that the people that are scheduled for ablation or contemplating it, are frightened and are questioning their decisions. Remember, tomorrowsdream's experience is rare. It is very unfortunate that it happened but it is definitely not the norm. Although ablation is not a picnic, it is not usually the experience that she had either. For the people thinking about or scheduled for ablation, read my previous post from Oct. 1st ,entitled, "words of encouragement to all." The decision to have an ablation is very personal and you have to decide if the possible benefits outweigh the risks.

tomorrowsdream 10/23/2011

Hi, my experience is not that unusual, and very common for people in persistent A-Fib. It simply doesn't work, especially if you can't take the drugs afterwards. Anyone with proxymal A-Fib is an excellent candidate for ablation, but if you have had this ongoing for a couple years and your rate was controlled, then you can only make things worse...and today I can feel every irregular heartbeat. I now am going to have to be on something for rate control. No, everyone does not get a collapsed lung...that is the uncommon part. The fact that ablation does not work for persistent A-Fib is very real though, and unless your Dr. is giving you all the wrong info you will find this info out by yourself...I only wish I had listened to my gut and stayed atymptomatic and lived with the A-Fib. I will say just once more...Persistent A-Fib is what it is....and it normally can not be fixed with 3 or more ablations, and they couldn't pay me to have another one.

Petey...just stay on your program. If I had it to do again I would stay asymtomatic with the A-Fib and just treat it with my coumadin as I was doing. I also am back taking my Lopressor and will probably end up on something else. Thanks for taking the high road. You have done your research.

Gina, if you have only had A-Fib since Jan. you are a great candidate for A-Fib. You aren't permanent.

RN52, I am a retired nurse myself, but when I retired they weren't doing ablations, so my knowledge was limited. My experience with persistent A-Fib is much more common then you would ever think.

tomorrowsdream 10/23/2011

I also thought the heading of my post was pretty clear RN...don't read it if you don't want to hear my experience....and please don't give anyone with persistent A-Fib a false hope that ablation will ever help.

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