Hello everyone. I'm in the process of sorting out whether or not to have another ablation, which would be my third. Because it feels like a big puzzle, I think that writing about it might help with that.
After discovering this wonderful forum, I had a bumpy few weeks of adjusting to med switches & really taking in that certain directives from my docs hadn't been so great for me. I feel like I've dealt with that now and am so grateful for what I've learned here. It felt like a much-needed respite/melt down from dealing so much on my own with the mental game of AF. Much-needed support and understanding!
So now I am having episodes more frequently, yet they are generally easier to bear, unless they come in conjunction with insomnia and keep me up all night. Those are the worst.
I saw my cardio last week, who suggested I start taking 50 mg Flecainide twice daily instead of only PIP and that I speak to my EP about another ablation. My second ablation was 10 months ago.
I took the first 50 mg, not in AF, and it triggered an episode. From past experience, I can sense a Flec-induced episode. I shared with my cardio about this and was happy that he actually called me in response. Still holding off on daily doses and doing PIP.
Recent blood work shows a low platelet count, which my doc of Integrative Med thinks is dangerous with regard to having an ablation; he actually thinks it could kill me. The cardio thinks the low platelet count isn't a problem.
I wonder if others have faced a similar situation with low platelet count being a factor in the decision about having an ablation.
Going into my second ablation, I was quite optimistic and able to sort out the various logistical and financial issues to make it happen. My brain seemed to function better, then, too.
The fact that it didn't really work has me feeling much more cautious about going back for a third, especially with my doc of Integrative Med generally not being for it. I know that if I told him I wanted to do it, he'd support me. I'm fine with making my own decision, but am just really not sure yet.
I'm self-employed and so the financial aspect is rather significant. Meaning that I feel that I would need to be prepared for the possibility of more time off from work to recover, as I experienced after ablation #2. Plus still being behind financially from #2.
So that's where I am. Oddly, after a wicked night of insomnia and a long bout of AF that finally stopped this morning, I actually feel better able to dig in and get some work done. I felt great yesterday and tried walking just a bit more briskly than usual. Nothing terribly strenuous, felt great....until 1 am, when the episode hit.
My brain has been mush lately, so I've had trouble calling up my usual focused way of being able to get things done in promoting my business. Which is partly why I'm reluctant to be on Flec all the time. The depressive side effects make it harder for me to think clearly.
I'm not asking for any particular advice, but if you'd care to share your experience of deciding on another ablation after having one that didn't quite work, I'd be happy to hear it. Your kindness and support are always welcome. I don't have many people here that I can talk to about all the aspects of the decision and who understand what it's like to sort through the various factors.
Writing does help. Gets the various thoughts out of my head.
When I was offered a third ablation my daughter kept telling me not to have it. I had a feeling that her saying that, was a sign that I shouldn't go ahead. I was telephoned by my AF nurse on a Friday to say I could have it the following Wednesday. It troubled me, but I went ahead and to be honest I'm glad I did. So for me it was third time lucky and I've been so much better since.
The decision has to be yours though and you shouldn't really be influenced by other peoples experiences.
Thanks, Jean. Dealing with AF has pushed me to become stronger and clearer in making my own decisions; I'll give it that! Even if it means telling a doctor politely that their suggestion isn't good for me, whether a particular medication, dose, etc.
It's taken me a while to learn that I need to really listen to the docs, but also research and make my own decision, especially given that my system is more sensitive than most people. In certain appointments I have just crumbled and not been able to speak up for myself, only to pay a steep price later with awful side effects from a med I didn't really need in the first place.
I already feel so much better having written down those parts of the puzzle and thus getting them out of my head.
I'm glad your third ablation worked well for you and appreciate your support!
I am so sorry you are having a hard time after two times around.. WHAT does your gut say about doing it again? Have you tried life style change in regards to less caffeine or coffee of if any of your meds might be working against your AF?
Thanks. I've done everything possible in terms of lifestyle, diet, checking meds, etc.
The reason I'm so careful with the meds now is because I find the side effects make it harder for me to get a clear connection with my intuition to get a clear signal. It's getting better, now that I've made discoveries & changes.
Meds play upon our systems. I have happily been taken Nicinimide 500 mgs for a year and found it elevates to blood sugars to diabetic levels! Really?!?! I'm not taking anything I don't have to anymore. Backing down on BP meds also. Ugh.
I’ve followed your posts here and must say I’m impressed and inspired by your ability to trudge through this whole process. The logistical issues and financial burden coupled with the brain fog of medications makes for a lot of stress. I was so fortunate that my second ablation was successful and to have had excellent medical insurance. My daughter was able to take care of me through the recovery, helping me with the right decisions.
My cardiologist was great and his assistant explained everything quite well.
Perhaps a second opinion for you is available...from another well respected cardiologist? Just a thought. I wish you all the best of health and happiness.
Thanks, Piratejeff. Truth be told, it really has been a nightmare. Though I suppose somehow it's better than my first ablation 5 years ago, so it's a more tame nightmare.
My first ablation happened just a few months before Obamacare made it illegal for insurers to deny claims based on their assertion (faulty or not) of pre-existing condition. I had to make all of the decisions about treatment not knowing if any of it would be covered or how much I would have to pay. So at the encouragement of my Primary Care Physician, who dealt with this all the time with patients, I made the decision to have the ablation, having no idea about the financial end of it.
Afterwards, I got the bill, which the insurance refused to pay, claiming I had already had AFib. For the ablation and one night in the hospital, not including the professional fees, it was $104,000. They sent me a bill for this amount, stating "Please pay in full at your earliest convenience." I still have that bill, framed.
My ablation recovery was spent fighting the insurer. I'm still amazed that I never went into AF during all of that. It took over a year, but I fought them and won.
To my new pals here from the UK, I hope that however imperfect your NHS may be, you count your lucky stars that you do not have to deal with this kind of financial stress in relation to your health care. The doctors typically don't even care about it, like the on-call EP I got recently who told me to get on the ablation schedule right away. When I told him that the logistical and financial aspects are significant in that decision, he cut me off and dismissed my concerns.
When I started having episodes in 2017, I ultimately needed to leave my EP's practice for my current cardiologist because I could no longer stand being yelled at by them in response to simple questions concerning my care. I've thought about looking for yet another one, but at this point I don't have the energy for it and actually doubt that there are any who are much better.
Dealing with chronic health issues is hard enough without having to worry about insurance companies, exorbitant medical costs and lack of cash flow being self employed. All the best with the decision making process Nella423.
Thanks, Kaz. I so appreciate your kindness and support, as well as that of everyone here. It has really helped me out a lot to write things down, send some emails to my docs and sort through exactly what actions I can take in order to lessen the anxiety and find some solutions. Connecting with kind people who understand makes all the difference.
It seems to me that your conflict is between advice from your conventional EP and your Intergrative Doctor? (I do hope they are also a conventionally trained doctor as well?). Firstly which platelets? I don’t know too much but I do know there is a difference. I am immune suppressed and therefor any infection affects me really seriously - I wouldn’t chance any invasive procedure unless I knew my bloods were good for me - I need my lymphocytes to be less than 0.5 which would be low for most people but I need them at that level to prevent a flare from other antibodies. Ablation and more likely the drugs used did exacerbate what was for me then - an unknown underlying condition and had I known about it - I probably would t have gone ahead at that time.
An Intagrative Doctor looks at your whole, an EP and Cardiologist only sees you through the lens of your heart.
The levels for optimal health and the levels whcih NHS consider ‘normal’ are very different.
In the end only you can make the decision and I do hope writing about it and the responses given here will help you make the decision. I think you probably have the information you need, you just need to trust your inner knowledge and judgment.
Thanks, CD. Since posting, I've heard back from my cardiologist and my wonderful Primary Care Physician (I think you use GP to describe this doc?). Both of those docs do not think that the platelet count would preclude having the ablation. The acupuncturist/Integrative Med doc says it could kill me. Fun to navigate that divide!
My PCP has a way of guiding me without just telling me what to do outright. She played a key role in my diagnosis 5 years ago. In fact, she was the one who detected the irregular heartbeat in checking me when I was incredibly sick, just pain everywhere. She told me to head straight to the ER if I had certain symptoms....2 days later I did, I went, and AF was the diagnosis. She guided me through that awful time, recommended that ablation when I was facing the choice of having it, with the financial end being a question mark. She's the doc I trust the most. She really is a wonderful balance between the ultra-specialized cardio world (she recommended my cardio; he's a good friend of hers) and the world of my acupuncturist. Very grounded and sensible and open-minded, too. Going for training in Integrative Medicine.
Her advice was to become clear about my goal. Is it to be free of AF? Then the ablation would be worth doing, with the benefit, we'd hope, of being free of the medication.
It was very interesting; I'd sent her an email with my blood work and questions and concerns and request for her opinion. She was matter of fact and by the end said she recommended I do it.
I'd been so anxious, as I expressed in my original post, but as I read her email, my anxiety calmed almost instantly. I feel more like myself again, better able to calmly think through the options and make a plan. I'm also quite clear that I'm not one of those people who can calmly live with AF, as I experience it now, for decades, on meds.
As much as I love my acupuncturist and value his opinion, I think that some of his opinions have actually contributed to my anxiety. The herbs definitely help me in general, but they have not stopped the episodes.
I have an appointment scheduled for Monday with my EP. I feel much better able to come prepared with a list of questions and blood work for him. I want to discuss the risk of internal bleeding that my acupuncturist has concerns about, among other concerns.
Nella obviously talk to your doctor but it may have been co-incidence with the Flec rather than the cause - why not ask him if the next time you have AF rather than take as a PIP when the AF goes you continue to take the does he recommends so that you will get a clear sense if Flec does any good - that’s the way I did it and has been pretty good for 10 plus years....
The med part of the equation is the easiest for me at this point; I can feel the difference between a Flec-induced episode and others that are typically triggered by overdoing it somehow.
Flec clearly does not work for me as intended most recently by my cardio, moving to prophyllactic use as opposed to PIP.
When I'm not in AF, it triggers it. I tried again last night to see if it would keep my heart calm and let me sleep. Nope. Episode plus another sleepless night. But - a smaller dose + Arnica did stop it sooner than just plain Flec as PIP.
Bella, where do you live? I am in Queens, N.Y. and am retired from healthcare as a clinical social worker. I worked in dialysis and my office was right near billing. When patients had these problems, I advocated with Billing spvsr. Obama care was good in that there were no longer lifetime limits or denial for preexisting conditions. I also worked in mental health and research. Having doctors yell at you could be a factor in your symptoms. I dropped my GYN for screaming at me and wrote a review on her site. She frightened me and was wrong. I was in ER three days later for acute diverticulitis. She had me thinking I had cancer that spread to my ovaries because of suggested though rare possibility that the benign growth removed from my breast might have had a tail and though unlikely I might want to see a breast surgeon to see if anything was left and if so, though unlikely be sure it is also benign. My ex GYN screamed that a papilloma is most likely to spread to uterus or ovaries. I researched and she was WRONG. The concern is negligible unless there are multiple papilloma and or discharge from the nipple. Neither with me. This was shared in detail in my review and I noted many poor reviews for her (bipolar?) No doctor should be screaming at you. I have good insurance but my Gastroenterologist told me there is a shortage of good GYN around. Find out if there is a LCSW you can speak with though hospitals usually hire the minimal required educated. I'd be happy to do some research and suggest PRN. I never dealt with Obama care as I retired 6 yrs ago but imagine it's as tough as dealing with Medicaid but worse and Doctors are probably angry over that waste of time and taking it out on patients. This was a long reply to arm you with information. Take a deep breath then take the next step.
I'm on your side and this site is your support group. Sending you peace.
Thanks, hock217. I'm actually quite politely fierce and capable with regards to dealing with insurers and billing offices. My first ablation experience honed those skills, of necessity, plus working with my wonderful Health Care Advocate (Mary Covington, fixmyclaim.com; for the Americans here needing help with insurance claims, she's a fabulous resource).
It's time-consuming and stressful, but I've learned enough to be able to win. I saved over $5000 on my last ablation by insisting the billers & insurance keep their words. Plus, filing a complaint helped.
The screaming office staff of the last EP definitely worsened my symptoms, as I repeatedly told my EP, who did nothing but tell me they're doing their best to help me. One wonders what planet people are on who think it's in any way helpful to scream or otherwise be rude to patients. I explained that this was my reason for leaving his care.
It's been an education in taking charge, speaking up, and moving on. The docs I work with now are not screamers and their office staff is lovely.
Great! Making such a decision is stressful enough. Getting a second opinion from your EP would be helpful. I've just had one but can imagine needing to make that decision. Hoping you will have a satisfactory outcome and feel well again.
I think you should explore the options and may be get the second opinion from the experienced EP surgeon. My second ablation for frequent PVC/ NSVT made me worse and so far seemed to screw up my heart rhythms.
Can you tell me what was the Flecainide arrhythmia - I am considering propafenone that is close to F;ecainide. When I have taken Flecainide, it gave me rapid onset tachicardia (probably just a sinus one).
I think I was prescribed Propafenone in the first place because I was having very distressing ectopics so it may well be better than Flecainide for that.
I was prescribed Propafenone 5 years ago, when first diagnosed and really sick and refused it after the first dose was overpowering.
Flec was prescribed for PIP by my EP in March and it's actually worked well for me, along my discovery that an Arnica chaser makes the episode stop much sooner.
However, it's not proving to be a great solution for me to take it every day, as my cardio suggested. If I'm not in AF, it'll trigger it.
Wow, what a lot you have had and still have to cope with. I can't offer any advice on what you should or shouldn't do but would encourage you to keep offloading and trying out ideas here. It will help you sort out your thoughts and come to a decision that is right for you. As you say we are lucky to have our NHS and I can honestly say I have never had anyone shout at me. That is totally unacceptable and you need kindness and help exploring your options. Take good care of yourself.
Oh my, grandmadogs, you are so kind! Thanks so much. You are absolutely right in saying kindness and help in exploring my options is what is needed.
Besides the insanely exorbitant costs, this is the biggest problem in American health care, in my opinion. There are wildly specialized doctors and treatments and a system that is so convoluted and crazy, that some of the people in it seem to simply turn off their humanity in order to cope. It can be an aggressive, bullying experience once you decide to have a procedure, mainly from the financial end.
I was absolutely stunned to come to the realization that, yes, it is perfectly acceptable in that former practice for the staff to be rude. When I complained, I was met with, "She talks to the doctors that way, too." And, "That's just the way I talk" to me. I really couldn't have imagined that a doctor's office would be like that. With the brain fog of AF, it took me a minute to gather myself to find a different doc. Fortunately, they are quite nice, calm, and kind in this doc's office. So that's progress!
Well done. It sounds as if you have found a good one. If they are calm it puts you in the right place to ask questions and time to think through your options. Keep in touch to let us know how you are doing.
I’m really sorry you’ve had to go through all of this. I’m also in the states. The single best piece of advice I can give you is to see a top EP with thousands of complicated ablations under his belt. Everything else is secondary. It’s worth the money to travel if needed as it will save you lots of money in lost income from time out of work, etc in the future. You are into the third and thus it’s complicated- and you want someone who can successly ablate- no sense in a wasted third ablation. My insurance covered a top out of state EP for two ablations this year and my insurance isn’t very good generally. So hopefully one of these docs will be in network for you. Afibbers.org is a us site with lots of recs on the highly experienced EPS that I speak of- dr Natale being at the top and the most experienced EP in the world.
I’m not sure about your platelets but once you are in the hands of a top EP they will answer that for you. You will likely have to wait for an appt but it’s worth it. As for the flec- again you want someone who can guide you on this- it’s so individualized. Rhythm drugs are pro rhythm for me which is one of the many reasons I chose ablation. Keep your chin up as you will get through this- I know how tiring it all is.
Hi Dinodog, thanks for your concern. I actually have been working with an EP with thousands of ablations under his belt. It's all he does and the center is a high-volume ablation practice (siliconvalleycardiology.com). I'm really not concerned about his technical prowess.
I'm also familiar with afibbers.org. Didn't have the best experience in my brief foray over there, truth be told!! I posted to introduce myself and could see that over 100 people had read it, but not one wrote anything in response, which I found just plain strange. Then when I wrote with a bit more about my situation and a question, I was met with such aggression, second-guessing and judging that I just left. I greatly appreciate the kindness people regularly show on this forum. I know that there is much passion in that forum about working with Dr. Natale; I've been clear from my diagnosis 5 years ago that that's not the path for me.
I do appreciate your concern, support and the fact that you reached out.
I agree that the best EP is the key. I am thinking about changing mine, for the reason that he although being wonderful and had thousands of ablations , in this case seemed to reach the ceiling (location of the multiple focus, variability of the PVC load, with my case not easy).
I used to live in CA in the valley and know the financial burden, fortunately I had PPO and good income and was able to sort very significant family surgery with minor problems. But when I moved to UK losing my US job paying for Cobra for the time my family had to remain there was depressing, so I agree Obamacare is a savior for my elder daughter who lives in MI now. NHS is not perfect but it does a job slowly but surely and unfortunately often duplicating the tasks and slowly moving between the GP and the specialists. All private doctors are in fact working in NHS and their main job is there as well as the experience .
I think that the choice of EP is actually quite personal and, frankly, somewhat nerve-wracking. When it comes right down to it, how can we really know anyway who's best? I have no idea why the 2nd ablation didn't fully do the job. Would I be better off consulting with my first EP, with the crazy practice? I've seriously considered it.
When I decided on my first EP, I chose him because I knew he would be conscientious and thorough, and he was. The fact that Dr. Natale has done the greatest number of ablations actually isn't a selling point for me.
I really wonder if the EPs can know why an ablation didn't work. I will be asking about this on Monday.
I feel strong enough now to be able to politely push on these matters. Why should I trust him to do another ablation when this one didn't work? I don't think I will be so blunt, but I do think about this.
you are right - perhaps second opinion will be helpful and then the gut feeling and may be advice of those who had the experience with the EP of your choice.
I am in the hospital right now - with funny episode of very unusual fast heartbeat with ectopics, dissy, nausetic and weak - wonder whether the arrhythmia moved up to atria.
I also think it is difficult to the EP to guess why it did not work - if you see the heart inside it is a full network of everything.
Hello nano-science, I hope that your heart calms down and that you feel better soon.
I know that as long as I feel congruent & calm, I can make good decisions. For me, this means managing the medications so that I'm not feeling depressed, drugged, disconnected from my intuition.
At the end of the day, I'll go with my gut. I see clearly now that the anxiety has been greatest when I feel disconnected, not myself, fuzzy-headed. That's when I make decisions I later regret.
I don't think it's worth it for me to go in search of yet another EP. We'll see what happens on Monday! Now that I'm feeling much, much better, I can see clearly that I do have a very good team. I just need to keep my wits about me, stay calm and present and ask all my questions.
This forum and all the kind people, like you, have helped me so much in getting clear with myself about what I need to do. Thank you!
Hi Nella, my ablation partly worked in that I am having shorter though still very fast episodes which knock me out. The only medication I can take is a low dose of Diltiazem because Propafenone (same class as Flecainide) which worked well for me for years began to cause tachycardia, and in combo with a higher dose of Diltiazem caused sinus pauses 😤
As I am 73 and have comorbidities which make an ablation more risky for me my cardiologist and I have decided that unless things get considerably worse I will not have another ablation but I may have a pacemaker to allow me to take medication.
Of course your situation is quite different. But as you have asked for advice I'm going to suggest something radical. I suggest you 'do a jeanjeanie' (she's famous now!) and drop all alternative meds, supplements etc and give Flecainide as prescribed a good chance.
Having said 'drop everything' I will contradict myself by suggesting a mild sedative might help the insomnia issue. My meds make me sleepy and I can actually sleep through an episode, lucky me I know.
I'm pretty sure you won't be happy with that advice, but I always appreciate a bit of lateral thinking myself! Best wishes with your decision 💕
Don't know your situation with the low platelet and any follow-up, but low platelets can increase bleeding. Might want to consult a specialist/hematologist if you haven't already.
Take good care.
Thanks, Indigo. I will dig into the platelet issue more with my docs. My acupuncturist is concerned about the possibility of internal bleeding.
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