My Ablation Story So Far... Hoping Things Improve!

Hello Everyone!! Greetings from Lancaster, PA! I'm new to this forum and relatively new to AFIB. I'd love to share my story and welcome any advice you have to offer. I am a 55-year old active & healthy female, other than being overweight (BMI 35). But I’ve very active and the owner of a busy wedding planning & decor business and work a ton of hours, although now that we are in off-season things are much calmer. I generally handle stress pretty well.

In March I started with rapid heartbeats - 150 bpm for 2 hours. It happened several times per week, with NSR stretches of up to 2 weeks at times. The cardiologist ran the full gamut of testing and determined all was fine with my heart, so referred me to an EP. In August, my EP put me on Eliquis & Metoprolol which didn't have much an effect, as my episodes of Atrial Flutter were getting worse - longer & more frequent to the point that I regularly had them for 3-4 times per week for 6-8 hours at 150 bpm. I was also having some episodes of AF, maybe one per week for an hour or so. But it was the fast heartbeat that was so awful, particularly since it sometimes hit right in the middle of a wedding that I was in charge of.

My EP then recommended an ablation since these episodes were really affecting my quality of life. He came highly recommended as the best in Lancaster. He was VERY cavalier going into this – I guess many surgeons have an air of arrogance about them, and I was glad for this confidence, and yet he undersold the procedure by telling me this: “It’s very easy to recover from. Some of my patients (with office jobs) go back to work that afternoon.” I asked him if there was anything that might go wrong that would cause me to have worse problems than I currently had, and he said, “No.” I mean, he went over some risks but definitely conveyed that this couldn’t make my AF/AFLUTTER worse.

I had the ablation on 10/22/20 so I am on Day 40 post-ablation. He ended up doing a PVI and a CTI. After the procedure, in my recovery room, the EP said that I had a “very unique” heart and it wasn’t as easy to do what he needed to do, but that he was successful. He then went on to talk about the blanking period and not to worry if some other areas of AF popped up that weren’t there before, that sometimes this happens after an ablation. I was like, “WHAT?!” I had specifically asked him this prior to surgery!! He told me to take 12.5 metoprolol BID.

I went home a few hours after the procedure in pretty rough shape. Absolutely exhausted and not breathing easy. I found it laughable (or cryable) that he had told me some people go back to work the same afternoon, when all I could do was make it into bed. That night and the next morning I could barely breathe, and called his office. He said he’d had to put a lot of fluid in me and prescribed Lasix, which in 24 hours took care of the problem and I felt pretty good.

All was fine until Day 6, when I went into awful a-flutter. I called his office & he told me to increase to 25 mg metoprolol bid as well as take 100 mg flecainaide bid. I started on these and was doing decently well on these meds, but had LOTS of EB which he did an EKG for and said were PACs. I still had occasional short bouts of AF and very few bouts of a-flutter, so felt like I was on the mend. However, at Day 29 I went back into a LONG a-flutter. It happened again on Day 31 & Day 32. On Day 32, it was so sustained that I went into his office to get a EKG so they could see how crazy my heart was. The only difference in these new bouts of a-flutter post-ablation was that my heartrate would only go up to 130 instead of 150. Little improvement!!

My EP told me to go off MET & FLEC and start amiodarone. (400 mg BID for 2 weeks, then start to taper down). I started on it and was on it for 4 days (still with MANY AF & a-flutter, although he said it would take at least a week to build up to full strength). At this point, I talked to a respected doctor friend who said he would NEVER want his wife on AMIO and I should really stop taking it due to its black box warnings. He said he felt like it was a “last-resort” med and questioned if I was at that point. So I called my EP and told him I wasn’t willing to take it, which didn’t make him happy. I told him I’d go back on the MET & FLEC instead.

I actually decided to hold off on MET & FLEC for a few days to see how I would do on no meds. It is now Day 40, so I’ve been off them for a 8 days (and off AMI for 4 days) and I’m doing pretty well. I’ve had 2 very short (10 min) a-flutter and really my worst symptom is endless EB. Before the ablation, my quality of life due to AF was 7/10 and now I would say it’s more like 6/10 which I’m sure you can understand is pretty discouraging. I read that the FLEC can give you heart palpitations as a side effect, so how confusing is that -- a potential side effect for the very reason I'm taking it!!

I have read with great interest of Dr. Natale and if I need another ablation, would definitely go to him. How far out does he book? Also, with the Blanking Period, has anyone felt WORSE than prior to the ablation, or is this a pretty sure sign it failed? I am at the point that I am afraid to go anywhere in case I go into a-flutter while there. When this happens, my only option is to lie down before I pass out (which thankfully has never happened).

Sorry for my ramblings, just wanted to put it all out there and get your thoughts. I am somewhat encouraged that my last few days (off medicine!) have been some of my best, but are the nearly constant EB dangerous for me? Would it be a better idea to go back on at least the MET for them? I am not a fan of meds if I don’t need them, but also want to be safe. (I have remained on Eliquis through it all.)

Would love thoughts anyone can offer. Feel free to ask me follow-up questions if something is unclear. How I pray I can beat this and feel normal again!! Thank you in advance for any advice you all have!

Martha Sue

Ectopics are annoying as hell, but they're harmless. Don't worry about that. The flecainide and metoprolol should reduce them, and there's no reason to be afraid of taking them. Practically every cardiology drug known lists palpitations as a side effect, and probably 50% of all other drugs do too. Unless you see a side effect listed as "common" or "frequent" it's best to ignore those lists because the way it works is every single patient who reports any side effect at all gets added to the list, which is why just about 100% of all drugs list things like headache and nausea as side effects.

From what you've described, it's too early to call this ablation a failure and be planning a second procedure. Natale books a few months out, but I would still wait at least until the end of the blanking period (3 months) before considering that route. You may be pleasantly surprised.

Oh, and a lot of people do feel perfectly fine the day after an ablation. I'm one of them, and I know a huge number of others, so your doc wasn't being cavalier about it.

Thanks Carey, I sure hope I'm pleasantly surprised. It's been much tougher than I ever imagined. I would say my quality of life is worse now than before the ablation. I realize and hope things may improve, but has anyone experienced feeling more symptomatic almost 8 weeks out than they did before the ablation? That's what concerned me. When they talked about the blanking period, I expected an occasional episode but not feeling worse than I did prior to it.

Also, is it normal to feel lightheaded and fatigued due to so many EBs?

Do you think the metoprolol will help with the EBs? I'd rather not be on both MET & FLEC if you think MET alone can handle them. I'm really not getting a-fib, but that was never my biggest problem.

Thanks!!

Hello Martha.

As Carey stated being on a beta blocker and antiarrhythmic are pretty common following an ablation. So far as the Flecainide and metoprolol you can take the metoprolol without the flecainide. However, you will need to take the metoprolol if you start back on the Flecainide.

Also, don't be discouraged. Your just over a month into your blanking period.

Martha - your EP did do a sales job on you but things could always be worse. (trust me on that) I was cautious about taking flecainide but now take it 2x a day since ablation. Now in 3 weeks of NSR after one last cardioversion. Hoping to make this one last.

Thanks for your responses.

I guess why I am doubting the success of my ablation even though I'm still in the blanking period is that I've had a worse time of things in the second month than the first month after the ablation, so it doesn't seem like things are going the right direction. But honestly, it's really the PACs that are the worst. The afib is about the same as it was, and the tachycardia (a flutter) seems to have gotten a bit better. The PACs drive me CRAZY so I think I will try the Metoprolol to see if that helps with them.

I might also go off the Eliquis because I am rarely in AF, plus have normal BP. I am not sure that I need to be on it, but just feel like my EP has me on it to be on the safe side. My latest blood work showed a big increase in my BUN creatinine ratio which I attribute to the Eliquis. I am only a 1 on the CHADS stroke risk chart, and that is due to being female. So I don't know why he has me on it. Does anyone take Turmeric or low dose aspirin instead of Eliquis?

Martha sue:

You said --. My latest blood work showed a big increase in my BUN creatinine ratio--- My BUN creatinine ratio has always been a little high, I take a blood thinner now but I didn't for a long, long time. My doctor tells me to drink more water, I just don't drink enough water, so not drinking enough water can cause your BUN creatinine ratio to become higher.

Quote
Martha Sue
Thanks for your responses.

I might also go off the Eliquis because I am rarely in AF, plus have normal BP. I am not sure that I need to be on it, but just feel like my EP has me on it to be on the safe side. My latest blood work showed a big increase in my BUN creatinine ratio which I attribute to the Eliquis. I am only a 1 on the CHADS stroke risk chart, and that is due to being female. So I don't know why he has me on it. Does anyone take Turmeric or low dose aspirin instead of Eliquis?

I was in the following before eliquis. I knew it thinned my blood because I was at the potato produce cart and a rogue potato from the top had rolled down and hit my arm. It wasn’t forceful or painful. More like a kiss. Anyway I developed a big ugly bruise .

[www.ncbi.nlm.nih.gov]

[www.verywellhealth.com]

It’s expensive but natural. It’s ground up and packed in capsules so there is no taste. You just know you are digesting worms.

I know there's a lot of people that believe in nattokinase and other products but I have a little story to tell about why I would never miss a dose of Eliquis or try to substitute with an OTC supplement.

# 1 a stroke is way worse than afib. if you think afib is a drag spend some time with someone that's had a stroke. Or watch videos of rehabs - where 2-3 years later it's a huge accomplishment to stack blocks or walk across the room.

# 2 my md prescribed DHEA to help a hormone issue we were working on. Originally, I took powder that I measured out each AM starting at 10 mgs and worked my way up to 50 over a few weeks per his directions, new labs came in and I was still low after doing 50mg for a month. He said I should go to 100. I did but with an OTC pill. next labs came a month later - all of a sudden I had 10x the level of DHEA. So apparently, my OTC pill was 10x more than it should be. I stopped taking DHEA for a full 5 weeks and level is now back to where it should be. This has happened to me with other OTC supplements, iodine was another example.

On something as serious as preventing stroke, I think you want the best most consistent medicine available. Eliquis removes the hassles and downsides of warfarin and afaik has very little risk when taken as directed.

Someone that lurks here and never posts may take an OTC and then have a stroke and then be brain damaged enough to never make it back here and tell us - "whoa- I wish I'd done things differently"

We advise go with tried and true when it comes to EPs - why should we advise differently for something as serious as a med that prevents strokes?

Thanks NLAMA, I totally understand. I for sure don't want to have a stroke, but I'm just trying to determine if a blood thinner is necessary since I only have a score of 1 on the CHADS stroke risk chart, and according to that, a blood thinner would not be recommended. I do want to discuss this in more detail with my EP for sure, but just want to go into the discussion with knowledge.

I guess the better question I'm wondering is this. I rarely get afib since my ablation, mostly A TON of ectopic beats. Do these put me at an increased stroke risk? If not, I question whether it is a good idea to keep me on Eliquis, and if not, that's why I would choose to take the Turmeric, or possibly low dose aspirin. (Sorry, susan.d, just can't do the earthworm thing!!! But thanks for the info!)

Worse after the ablation? Sure. I traded weekly AF of 2-4 hours for a couple weeks of bigeminy and trigeminy. Those really suck. Oh, and gastroparesis for about a week after the procedure (you do not want that, trust me). Oh, plus some runs of tachycardia...and some of it happened post-3-months. This is a Natale ablation. Not complaining, just saying that if a doctor is selling an ablation as a "walk in the park" that's really disingenuous, to put it very politely.

Now, getting towards 4 years out, solid. Nothin. No drugs. No worries. I drink (in moderation, but think Mediterranean--as in, pretty much a glass or two of wine every day.) I do strenuous hikes on the local trails, surf, etc. I can eat like crap if I want to (but the better health habits have really set in, I'm still 6', 170 lbs), but the point is: nothing is a huge deal.

Ectopics? On and off for about a year, sometimes not great. Now--you guessed it--nothin.

Bottom line: the blanking period can be really bad. And it can be longer than 3 months. Hell, my last tachycardia was almost a year out from the ablation, when I really overdid it in heavy surf and scared the crap outta myself. Don't lose hope!



Edited 1 time(s). Last edit at 12/04/2020 04:37AM by JKAF.

Quote
Martha Sue
Thanks for your responses.

I guess why I am doubting the success of my ablation even though I'm still in the blanking period is that I've had a worse time of things in the second month than the first month after the ablation, so it doesn't seem like things are going the right direction. But honestly, it's really the PACs that are the worst. The afib is about the same as it was, and the tachycardia (a flutter) seems to have gotten a bit better. The PACs drive me CRAZY so I think I will try the Metoprolol to see if that helps with them.

I might also go off the Eliquis because I am rarely in AF, plus have normal BP. I am not sure that I need to be on it, but just feel like my EP has me on it to be on the safe side. My latest blood work showed a big increase in my BUN creatinine ratio which I attribute to the Eliquis. I am only a 1 on the CHADS stroke risk chart, and that is due to being female. So I don't know why he has me on it. Does anyone take Turmeric or low dose aspirin instead of Eliquis?

Martha, DO NOT stop the Eliquis or substitute anything else during the blanking period no matter what your CHADS score is or how often you're in AF without your EP's specific permission. You are at heightened risk of stroke during the blanking period regardless of those things.

Yes, the metoprolol will likely help with the PACs. If it's not enough, ask your EP for something more, such as flecainide.

It's extremely unlikely the Eliquis has anything to do with your BUN numbers. Like Elizabeth said, drink more water.

There really isn't much I can add here but here I go.
1.) Do not stop the Elequis
2.) Ablations are not a walk in the park and don't let anyone tell you they are
3.) The blanking period can be a rollercoaster so be patient.
4.) DO NOT STOP THE ELEQUIS

Thanks all. This is really helpful to know, especially reading JKAF's story! I had really given up hope that my ablation was successful, but I will remain in hope that it was. I actually have been doing a little better this week... it's the first week in the 6 since the ablation that I have had the thoughts that this potentially worked, rather than being full of discouragement that it failed. Much of that is thanks to you all sharing your stories that what I am experiencing is not completely unusual.

My EP is known as the best in this area, but we're not in a big city, so that doesn't mean much. And yes, he was definitely WAY too cavalier about it. I would have surely waited until a slower time in the year to get it done had he not convinced me I'd be "back at it" within a few days at most, if not the same day! If I need to be reablated, it will definitely be with Dr. Natale, but I will wait until my blanking period ends (January 22) to make that decision.

And yes, I will definitely stay on the Eliquis. Not worth the chance of a stroke for sure!!

Thank you!!

No one has mentioned Magnesium or Potassium yet. You probably are low in Mg, and will get lower if you keep taking Flec. Dr. Dean's book says it contains fluoride which antagonizes magnesium. We are all different. Flec made my AF worse, nothing worked for me but Amiodarone. I had to take it for about a month to control my heart rate while waiting for the hospitals to open after closing for non emergencies due to Covid. I went off it for about a week before ablation. Felt great afterward almost ecstatic! then a few days after the ablation, an 8 hour AF episode, then 2 days later 16 hour. I actually asked to get back on Amiodarone for a few more weeks because I had to baby sit my grandkids, due to daycare being closed and my son and daughter in law having to work. . I could never make it through a day of babyitting a baby and a toddler with AF. My doctor's NP said Afib begets Afib and normal sinus rhythm begets normal, meaning, the longer you stay in NSR, the more likely you are to keep it that way. I stayed on the Amio for about 5 weeks after ablation at the lower dose of 200 mg per day, then tapered off, and never had a blip after that 16 hour episode. One EP that I ALMOST had do the work, was going to have me on Amiodarone for a bout 3 mounts before the ablation and throughout the entire blanking period. I was afraid of being on that long so went to someone else. I don't think it causes bad effects unless you are on it for long periods. It sounds like you are in a stressful profession. Maybe something to balance that stress would help, like yoga and meditation, deep breathing alone helps. Stress deplete magnesium . I've read 3 books on it, and am now reading The Paleo Cardiologist, thanks to someone in this wonderful forum. It's a good book! If you want more info on magnesium, feel free to send me a private message and I'll tell you more about it. I agree KEEP takind eliquis! Stroke is worse than death or AF

Thanks for your reply. I do take one 500 mg MagSRT (time release) each morning. Instructions say to take 4 per day so I should probably take more.

I also have started back on 12.5 mg Metoprolol BID to help with PACs. Seems to be helping a little. And I remain on Eliquis.

One question I have is when you all talk of NSR, does this mean no PACs? Or can you be in NSR and still have a lot of PACs/EBs? That seems to be the case with me... that I am not in afib but have a ton of PACs.

Quote
Martha Sue
One question I have is when you all talk of NSR, does this mean no PACs? Or can you be in NSR and still have a lot of PACs/EBs?

No, NSR does not mean no PACs. You can be in NSR and still experience PACs. That's true even if every other beat is a PAC, which is known as bigeminy. There was a time that I experienced PACs in a bigeminal pattern nonstop for weeks at a time that even sotalol and Tikosyn couldn't stop, so I know how maddening they can be.

Quote
Carey
No, NSR does not mean no PACs. You can be in NSR and still experience PACs. That's true even if every other beat is a PAC, which is known as bigeminy. There was a time that I experienced PACs in a bigeminal pattern nonstop for weeks at a time that even sotalol and Tikosyn couldn't stop, so I know how maddening they can be.

OK thanks Carey, that's helpful to know. That's good news then because I am in NSR except for a random few minutes every couple of days. It's just those PACs that are driving me crazy. Hopefully they subside with Metoprolol. I don't have a nonstop bigeminal pattern with the PACs, but have them for a few hours each day. Often when I am lying down or sitting, I don't have them, and then when I am more active they kick in, which is frustrating since it causes me to be far more sedentary than I'd like to be.

Quote
Martha Sue
Hello Everyone!! Greetings from Lancaster, PA! I'm new to this forum and relatively new to AFIB. I'd love to share my story and welcome any advice you have to offer. I am a 55-year old active & healthy female, other than being overweight (BMI 35). But I’ve very active and the owner of a busy wedding planning & decor business and work a ton of hours, although now that we are in off-season things are much calmer. I generally handle stress pretty well.

Martha Sue

In the long term it would help if you were to reduce your weight and stress levels some.
"researchers at Australia’s University of Adelaide found that 45% of participants who lost 10% or more of their body weight and kept their weight stable for four years remained free of AFib symptoms — without surgery or medications!"
[www.everydayhealth.com]

You may also like to consider eating Natto, It's a fermented soybean from Japan. It gets a bad rap because of its slimy texture but if you can get over that its a miracle food which is high in vitamin k2.

[draxe.com]
[www.nyrture.com]

Vitamin k2 stimulates calcitonin which controls calcium in your arteries, too much calcium build up in the tiny arteries of our hearts may be the cause of afib in the first place. Calcitonin directs the calcium to our bones where it belongs.

Natto plus vitamin D have cured my monthly afib.

Quote
Martha Sue
Thanks for your reply. I do take one 500 mg MagSRT (time release) each morning. Instructions say to take 4 per day so I should probably take more.

A 500 mg serving of MagSRT is 4 tablets (serving size), this means you are actually taking 125 mg of magnesium.

Quote
GeorgeN
A 500 mg serving of MagSRT is 4 tablets (serving size), this means you are actually taking 125 mg of magnesium.

Thank you GeorgeN, you are correct!! I was thinking each tablet was 500 mg and even though it said to take 4/day, I thought that meant I'd be taking 2000 mg/day!! But after you mentioned that, I looked at the bottle and realized you are correct... it takes 4 tablets to reach 500 mg/day! Thank you!!