Permanent Afib Diagnosis Next Step? - Atrial Fibrillati...

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Permanent Afib Diagnosis Next Step?

marinoperna profile image
24 Replies

I'm a 72 year old male. Had my bout with prostate cancer which is under control after 4 months got my continence back (had me worried for a bit!) still dealing with ED but now it appears that I have permanent Afib. Went thru the surgery reaching for that last bit for the longest life, only to now being diagnosed with this. I was fine a year ago when i had my surgery so I have had this for no more than 13 months. I've had a electrical cardioversion but it lasted less than a day before I went back into Afib. It was said that a second one will probably not be any better. So now, I'm told, from my heart specialist but especially from an electrophysiologists, that if I don't do something within the next few months (Cardiac Ablation was the suggestion) it will only get worse and lead to a point of no cure at all.

Other than feeling tired to the point of wanting to take a nap several days a week, I don't really feel any different. My chest is not pounding like a friend that I speak with. My heart rate is generally about 80bpm (my old normal was around 60). Had an ultrasound, heart is strong with no disease visible, valves looked good, no plugged arteries but then the lab tech told me: "you see this shady gray looking "V" shaped area, we see that in a lot of patience's who have had Covid." Well I've had 2 Maderna shots but no Covid. Does that mean the "Vaccine" may have given me this? and they want to give it to kids? What's going on?????

So, is 80 bpm something to worry about enough to have ablation. That scares me! It's my heart. I have only one. I had only one prostate but loosing it didn't kill me!

I know this is a very loaded questions but are there: Any suggestions for vitamins (heard to try Magnesium Biglycinante), exercise, foods (I do like my beer so am trying to slow down especially on weekends as well as a couple cups of cappuccino (sometimes straight coffee) in the mornings) to bring me back to normal or at least lessen the impact ot my heart?

Any suggestions for an honest successful specialist who will tell me the truth of what I need to do (do I really need this surgery with my "mild" condition?)? I'm in Florida but for the best opportunity i am willing travel anywhere! I really do like living!!

Currently on 10mg Eliquis (about 2 months) and even there I'm reading that 10 may be too much to stay on for the rest of my life but rather to do 5mg!

Marino

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BobD profile image
BobDVolunteer

I'm about 11 years further down the line to you re the prostate so there is plenty of hope Marino.

Re permanent AF this is not a recognised state but merely an agreement betwen doctor and patient that no further attempts to gain NSR are considered worthwhile. That said there is no best treatment for AF as it is not considered curable and any and all treatment is only for quality of life, in other words symptom control. I am mindful that you are in USA where money tends to drive medical treatment so I would suggest that your EP may not be totally honest with you. Your AF burden sounds very light and I would suggest that so long as your rate is well controlled and that you are anticoagulated where appropriate I would leave well a lone.

Regarding your idea about the vaccine, you must understand that it is not a live vaccine so you can't get covid from it. Lots of people have had covid prior to the vaccines being available and for some it was mild. I would also be careful about jumping to conclusions because of what a lab tech said.

Regarding life style there is so much evidence to support life style changes as a way of reducing AF burden. and why would you not want to. Less processed foods, less meat. less stress and stimulants can all help as can weight loss where appropriate.

mav7 profile image
mav7 in reply to BobD

Hi marino

I am 75 with permanent afib since Feb '21 and face the same dilemma.

When you say 10mg of Eliquis are you referring to 5mg twice daily ? That is what I am prescribed. Anything over, you may want to question your medical professional.

My heart rate also averages mid to low 80's. Are you taking any medication for heart rate control like metoprolol ? Doctors seem to think 80's is acceptable for me.

Encourage you to contine to research and make the best decision for your circumstances. Difficult to get a concrete answer from medical professionals because there really isn't one.

Always good to get a second opinion.

My personal decision at this point is to control my heart rate with medication and forego surgery. Did have 1 CV that lasted for 3 days.

Lot of information and experience on this forum and the internet.

Best to you in managing your health.

Edit: Forgot to add. ECG's are sometimes difficult to read. I would not be concerned that a lab tech made comments about possible Covid. Consult with the cardiologist or radiologist.

marinoperna profile image
marinoperna in reply to mav7

Hi Mav7,Sorry for not being more precise. the 10 mg is each tab twice a day. I'm reading that's too much and appears you are confirming the same.

That's all i take at this stage. They have me worried that if i don't do something and soon i will not be able to fix this which will lead to a damaged heart needing surgery and possibly along with a pace maker. Cure rates for ablation just don't seem good enough vs the severity should something go wrong.

Thanks for taking the time to write. Certainly appreciated.

Marino

mav7 profile image
mav7 in reply to marinoperna

The common phrase on this forum is "we are not doctors, so consult with your doctor" so keep that in mind. But we do have patient experience.

- Do check with your doctor on Eliquis. Google "chad score". Perhaps there is a reason based on your medical history you are prescribed 10mg.

- Most important, have you ever worn a heart rate monitor prescribed by the doctor for an extended period ? If not I would ask to wear. Gives detailed info on your heart and periods of afib even when you sleep. Many cardiologists in the US prescribe the Zio patch. I am partial since this is how my afib was discovered since I had no symptoms. Apple Watch and Kardia are good but imo not as through as a medical approved heart rate monitor.

- Individual decision on electing surgery. Lot of factors. As mentioned, I have chosen the medication route at this time. Encourage you to do research and get as many medical opinions as you deem appropriate.

- Keep us posted and the best in making your decision.

marinoperna profile image
marinoperna in reply to mav7

Been thru the prostate forum before so I'm fully aware and understand the term.

I'm not looking for a medical diagnosis. I am looking for suggestions on who has enough knowledge behind them (someone like Tall_Allen in the prostate forum) to offer some guidance in helping find the right doctor or clinic to talk to. Do I actually need to do anything. Then if an ablation is needed, who has done thousands of successful ablations (leaders in the field), the best to do the actual ablation? Google searches just are not helpful!

Thanks

marinoperna profile image
marinoperna in reply to BobD

Thanks for taking the time BodD. Insight is certainly appreciated. That was my worry as well. Our doctors get paid based on them finding more patients to work on. I just don't want to be one of them unless it's a matter of life vs death.

My AF friend's heart beat is generally around 120 bpm when he's in it. Mine without any meds is only 80ish. I would think that 120 is something to worry about. Fortunately he is in and out of AF whereas i do not. Every test, every EKG in the last 5 months has shown constant AF. Mine is way less but consistent. I'm really fine now but they have me worried that if i don't do something, and soon, i'll weaken my heart to the point of needing surgery and a pace maker.

The prostate surgery was a much easier decision!

Marino

CDreamer profile image
CDreamer

I would echo Bob’s comments but suggest you ditch the coffee & the beers entirely for a few months and look at Lifestyle Factors ie: Healthy Eating Plan, Breathing control and exercises, Exercise, Weight control, Sleep, Stress management - most important and controlling any known and identified co-morbidities first before even thinking of looking at treatments.

Ultrasounds are notoriously unreliable and subject to technician interpretation so if you really want to know what the ‘grey’ area is then I would ask your doctor for a CT or MRI scan if you are concerned - very expensive though - which will give more accurate and detailed information. I guess it also depends on what your health insurance will cover in the US.

For eating plan and supplement suggestions I like Dr Sinatra’s site - but I don’t use his supplements but it gives really good info, suggest you give it a read heartmdinstitute.com/heart-...

Also excellent info on the AFA website whose forum you are posting - lots of excellent info on various treatments and what they are and how to access but be aware that US and European advice does vary and as does opinion between specialists.

heartrhythmalliance.org/afa...

Best wishes

marinoperna profile image
marinoperna in reply to CDreamer

i suppose i don't really need to know vs the expense as it will not help with my condition of today. Just really curious as i have heard elsewhere that there is a possibility that the Covid and/or the vaccines can and do some hearts. The important part for me is trying to decide how dangerous or even if necessary at all is the Cardiac Ablation for all its risks vs rewards. Percentages don't seem all that great!

Who is there to trust?

Thanks for writing

Marino

waveylines profile image
waveylines

Well what a dilemma you are in. I have to say I dont think a uk doctor would worry about a heart rate of 80. However if your heart beat is irregular than that is something else. I definately would cut all caffeine and stumulants out. This might make a big difference. You can buy caffeine free coffee and tea these days. The alchohol is a big no no. Sorry...... You may find cutting out alchohol and caffeine makes a big difference and with a bit of luck thats all thats needed. You are on a blood thinner , Eliquis, to prevent strokes as once diagnosed with Afib the risk of a stroke is 5xs higher than someone with out Afib. 10mg twice per day is a high dose so I would ask your doctor why - the standard is 5mg twice per day. Your doctor hasnt precribed anything for your rate of heart -I assume because it is within a normal range and so no need.

My cardiologist told me Afib tends to worsen with time. He told me he doesnt recommend further intervention for me than drugs as my Afib is a consequence of cancer treatment so he said others parts of my heart might have been affected by the cancer treatment not the part that an ablation treatment tackles. Thats what I was told by an experienced NHS EP. So if it were me I would want to find out if your Afib is a consequence of treatment for prostrate cancer and if so what those implications are.

marinoperna profile image
marinoperna in reply to waveylines

Thanks for taking the time to write. Going to ask about why not 5mg He has a good reputation!

RussJun55 profile image
RussJun55

A couple of things: 1) Since you are in the US, Medicare should cover the expense of whatever imaging or treatments that your doctor prescribes as medically necessary, However, you may be required to pay a co payment – depending on your insurance. 2) A cardiologist should have reviewed the echocardiogram (ultra sound) and written a report detailing the results. Most hospitals have patient portals these days and you can often access clinician notes online. If not available, suggest asking for them. Good luck!

marinoperna profile image
marinoperna in reply to RussJun55

great idea as i haven't seen any of the results. Will do some checkingThank You

Mjlarson11 profile image
Mjlarson11

Marino

I am a 67 year old (U.S) who had an AFIB diagnosis similar to yours. I also was diagnosed with persistent AFIB at age 64. Mine was of the silent variety. I discovered it via a HR monitor while biking. My HR was at 135 bpm within one minute of climbing on my bike when it should have been around 70-90 bpm. However, other than preventing moderate - vigorous exercise, AFIB really didn't impact my life.

After (4) unsuccessful cardioversions it was clear I was going to have to give up biking and focus on simple (think dog walking speed) exercises. I would also be on blood thinners and Metoprolol for the rest of my life which was not ideal, but tolerable.

My doctor told me I should consider ablation if the AFIB was impacting one of my major life activities, and for me it certainly was having that impact. The inability to have periodic moderate-to-vigorous exercise impacted me physically and psychologically. Framing up the ablation decision in the way the doctor did, helped me made the decision to have the ablation and I am so glad I did. If biking was not important to me, I would not felt the need to have the procedure.

I had the ablation 14 months after my AFIB diagnosis and I have been in sinus rhythm ever since. I am also able to exercise pretty much like I used to although I have tempered the intensity which is good. Last year, my doctor recommended I have a Watchmen's device implanted which has eliminated my need for blood thinners.

Regarding heart specialists. From my research two of the best Cardio-AFib groups in the U.S are the Cleveland clinic and Mayo Clinic (which has a facility in Florida). They also offer a in-person or virtual assessment of your condition if you want a second opinion. Not sure if Medicare will pay for it, but I recall the price being about $500 - $1500 USD.

Hope this helps and good luck.

Mike

marinoperna profile image
marinoperna in reply to Mjlarson11

Well thank you Mike for taking the time to write. you had great success with your ablation. The long term success rates are not all that inspiring. Where did you have yours done? it appears that unlike cancer, AFib doesn't spread but in time can affect the quality of life. I want to know more on that. Stay on "active surveillance" or have the ablation? is there really a no turning back point? Where the heart gets so damaged one cannot do anything anymore? i was hoping for another 20+ years!

Mjlarson11 profile image
Mjlarson11 in reply to marinoperna

Marino - i had my ablation done in the Twin Cities at Fairview. Based upon the advice i got from a few doctors, here is what i looked for

1. Surgeon who has done 2000 plus procedures

2. Ensured the experienced surgeon will be doing the procedure and not a surgeon-in-training

3. I asked the surgeon about the experience level and continuity of his team. The cohesiveness and experience of the support team is as important as the surgeon.

My surgeon had done 4000 ablations in his career and had a high long term success rate.

I also googled his name for patient ratings (there are many sites that provide this info)

My resting HR is now in high 70s and i

do not expect to have long-term effects from Afib or the surgery. I expect to live another 25+ years as well.

Prior to the ablation I read many things that suggested the long-term outlook was not great. I am glad I ignored them.

mav7 profile image
mav7 in reply to Mjlarson11

Hi mj

I have similar stats as you and marin, though older (75). May I ask:

I read many things that suggested the long-term outlook was not great

- Are you referring to the success rate of an ablation ?

- When you were on metoprolol, what was your average heart rate ?

I take .50mg and my heart rate averages mid to low 80's. Just want to compare.

I can relate to the need for exercise to benefit physically and mentally (former runner)

Thanks !

marinoperna profile image
marinoperna in reply to Mjlarson11

Cannot seem to find an Doctor's qualifications without an appointment and those so far have been several weeks out. I'm told that since over a year that i could have been in AFib i need this done within the next 2 months or be face with possible heart weakening to require lifelong meds as well. you seem to have done your homework. Has your research found that long term even with low 80bpm currently without meds a permanent AFib will only get worse?

Thank you for the list. I've saved and printed one out for reference.

Mjlarson11 profile image
Mjlarson11 in reply to marinoperna

Marino

In response to your questions in your two replies

1. Pre ablation m resting HR was about 80-90 and it went up to 130-140 while walking. Post ablation my resting rate is 75-80 and walking is about 95-105.

2. I am currently on 25mg of Metoprolol. Prior to ablation I took 100mg each day

3. Re your question "Has your research found that long term even with low 80bpm currently without meds a permanent AFib will only get worse? "

I really cannot answer that question but your EP doc should has some thoughts.

4. Re your comments on doctor qualifications. Here are some websites I go to when researching medical folks. I am not sure how accurate they are but they provide a good starting point.

Caredash

Healthgrades

Rate MDs

U.S News Doctor rankings (also rank hospitals by specialty)

Vitals

WebMD

For surgeons I look for guys that graduated 20+ years ago...I want experienced hands working on me! You can also get background details on doctors from the hospital websites.

Having said all of the above, if your timeframe is short you might find yourself selecting a surgeon who has a calendar opening. I got my ablation around 14 mos post AFIB diagnosis and I know I wasn't able to wait much longer without risking its effectiveness.

good luck

marinoperna profile image
marinoperna in reply to Mjlarson11

Nearly the same boat. Thanks a bunch for taking the time to write back, Greatly appreciated

Marino

Singwell profile image
Singwell

Hi, do you mean you're on 2X5mg of anticoagulants or 2X10mg? The former is a normal dose and I think most of us here would say we don't notice it aside from bruising more easily. As to the AF- how do you feel in yourself? 80 BPM is a manageable rate and if you’re not uncomfortable and can do the things you want to in your life you might choose not to have an intervention, which in any case is not considered a cure. AF is a progressive condition and not considered life threatening, and many who are in persistent AF are more comfortable than those of us in paroxysmal AF, which is often more disturbing. My brother is now in persistent AF and barely notices it.

Singwell profile image
Singwell

Just been reading the thread here. Lots of good answers. I asked my EP about AF causing structural damage to the heart. He's known as one of the top EPs in the UK. He said no, on its own, without tachycardia for example and unless at very high rates for extended periods of time, no damage would be caused. Hope this helps Read the A Afib Cure by Dr John Day a US EP

marinoperna profile image
marinoperna in reply to Singwell

Hi Singwell,

Thank you for that.

That is the information I'm needing. The EP i went to see told me that within 10 years i would likely be needing surgery and a pace maker, as my heart muscle will deteriorate if i don't have the ablation soon (next 2 months) as the ablation becomes less effective as time goes on over a year in AFib . That doesn't give me a lot of time to ask question and get other opinions (if only i knew whom else to ask) my resting heart rate is around 80bpm and even with mild exercise it is really not any more noticeable than i can remember prior to having AFib. I just dont want to destroy my heart, waiting for the inevitable, if what he says is true!

Trying to get as much information as i can. Like all of us i only have one heart.

I'm glad you have a doc you can trust. Might you/he know of a list of specialists with excellent credentials?

I'm beginning to think that here in the US those on Medicare are taken advantage. The government pays so why not just do it.

I did post 2x10mg but looking at my new script it's now 2x5mg. per day. Thanks for asking as i would have kept on thinking wrongly.

Singwell profile image
Singwell in reply to marinoperna

2 X5mg perfectly normal. There are other US members here. Why not do a separate post asking for recommendations?

PrinzMongo profile image
PrinzMongo

I'm a fellow traveller of sorts as I had a brush with prostate 'issues' a 8-years ago when I had a negative biopsy for a suspicious mass on my prostate and a successful cardioäblation last August for SVT AFib.

I've aggressively worked on life style since I went whole-food vegan + SOS free. Dropped 120 lbs since my heart attack a decade ago and ~30 lbs since my cardioäblation last August to stack the odds against AFib recurrence.

So far it's working as just day before yesterday I did a solo hike up Mt San Gorgonio (12 hrs, 21 mi/34 km, 4623 ft/1,409 m climb to 11,503 ft/3,506 m peak).

I'm presently on Eliquis (5mg bid), metoprolol (25 mg qd), valsartan (40 mg qd), CoQ10 (200-300 mg qd), B12 (1000-2000 mg qd), D3 (2500 IU qd). Was on lisinopril too till my heart rate was too slow (40-50 BPM), BP too low (100/55). Things are better at 45-55 BPM & 113/60.

I was never much of a drinker... maybe a six-pack a year and a half-dozen gins and tonic over a summer which my cardiologist says is just as well. I did a clandestine alcohol challenge during cardioäblation rehab and drinking a G&T before the session was undetectable by the cardionurses on my heart telemetry. That said, my cardiologist says alcohol is a potent heart inflamer and it's just as well I leave the alcohol alone.

I attribute the fading away of my prostate mass to the 3-4 Tbsp of flax meal I have with my daily bowl of barley-steelcut oats-buckwheat. I eat 'tons' of greens to foster NO formation in my arteries and tons of antioxidant rich spices and good to combat arterial inflamaton.

My feeling is the deck is stacked against the consumer/patient due to the foods we are marketed and my significant heart disease requires significant efforts to undo my heart damage and stave off recurrence.

I would recommend pcrm.org (Physicians Committee for Responsible Medicine) for dietary-lifestyle info and nutritionfacts.org for information that discusses how we can use nutrition to help our bodies get/stay healthy. Dr Michael Greger's book How Not to Die is an outstanding resource as well. Oh, Dr Dean Ornish & Dr Esselstyn, are guiding lights for me regarding heart disease reversal . Dr John McDougall has provided outstanding lifestyle advice to help manage weight. Dr Joel Fuhrman and cardiologist Dr Joel Kahn are other excellent resources though I cast a jaundiced eye on their supplements and vitamins offerings.

Best wishes for your efforts...

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