AFIB is a Progressive Disease

[Silver]

Thank you for starting this thread.

I have had only one episode of AFIB during a hospitalization in June for surgery then sepsis after my gall bladder ruptured. I converted back to normal sinus rhythm within 1.5 hours. I was immediately started on an anticoagulant and am still taking it. I have had some "flutters" recorded on a 14 day event monitor, but no further AFIB.

I have seen two cardiologists, the second was for a second opinion. This cardiologist is also an electrophysiologist who specializes in AFIB and performs a couple hundred ablations a year.

His recommendation for me was to have an embedded loop recorder for 6-9 months to figure out for sure what my heart is doing. So I am having that procedure this coming Tuesday, 12-5-23. It's done under local anesthesia, and is a small cardiac monitor inserted under the skin on my chest.

I may be also headed for an ablation, but it will be good to have the data to be sure that's the right move for me.

This morning I had the loop recorder inserted under the skin on my chest just over my left breast. I chose to just have local anesthesia although they did offer sedation if I felt I needed it. The procedure itself was no big deal and took maybe 5 minutes once the electrophysiologist got started.

The biggest pain was needing to be at the hospital at 5:30am this morning, (It was done in the cardiac cath lab). And of course the physician wasn't there until around 7:30am and started my procedure around 8:15am. Geez....

I was discharged almost immediately afterwards, and the lidocaine has worn off, but there is minimal discomfort so far. I have a small monitor that looks like a cell phone that sits near my bed, and data from the loop recorder is downloaded every night.

I am hopeful I have no more episodes of AFIB and can get off the Xarelto.

 

[Eagle43]

Six months after my ablation I was taken off Eliquis. I had been required to wear a small heart monitor for a week prior to stopping Eliquis. Cardiologist says I am fine, take baby aspirin,and resume anything, including exercise.

The ablation was easy, as was recovery. I haven't noticed any flutter and I'm glad I got the ablation.

 

[Koolau]

This article helped me past my hesitation on cardiac ablation. Perhaps it will help others.

https://draseemdesai.com/afib-begets-afib-an-electrical-cancer-of-the-heart/
"AFib can affect people from all walks of life. AFib is a progressive disease, meaning every episode of AFib causes changes in the heart to make it easier to have more episodes. The abnormal rhythm causes electrical and structural changes in the heart’s electrical tissue. This is why the phrase “AFib Begets AFib” is often used."

My procedure is 12 December with a possible pacemaker as a bonus.

Thanks for the article. I finally got round to reading it. Yes, both of my cardiologists (in order - not at the same time) mentioned that AFib begets AFib. Now I have a better understanding of that phrase. My first episode was maybe 30 years ago. Since then, my episodes have progressed from maybe once in 5 years to once/year. My doc(s) have suggested but not pushed ablation. I'm still on the fence.


I am concerned about DW because she seems to be increasing in frequency - maybe once/month. Both of us seem to convert on our own. I guess we'll see what happens and keep taking our Eliquis. We both are able to feel it when AFib comes on, though mine is quite noticeable and comes with rapid heart beat.



We bought a KardiaMobile (SP?) and it always says "yep - you're in AFib" when we think we are in Afib.



Thanks again.

 

[Alan]

The day I went into hospital was the first time they actually saw me in Afib but they had confidence in the reporting and copies of the traces from my Kardiamobile to determine that I was a good candidate for cryoablation. I always had symptoms, dizziness, when I went into Afib and if I was climbing hills then I would be very much short of breath.

I always remember the AP saying to me that “a clever French doctor” determined that it was the cells surrounding 4 blood vessels, as described in the posted article, that were most likely to be the first to misfire. My ablation involved inflating a bulb just inside each of those vessels and pumping some cryogenic fluid into them to kill the cells surrounding them. The vagal nerve runs close by so after each freezing they would stimulate the nerve, causing my stomach to flip. The stomach sensations were the only uncomfortable parts of the procedure.

 

[RonBoyd]

We bought a KardiaMobile (SP?) and it always says "yep - you're in AFib" when we think we are in Afib.

I, too, can (highly) recommend the KardiaMobile devices. I have used the six lead one for many years to monitor my Afib. I have the Card but have not had need to use it... yet.

https://kardia.com/
https://store.kardia.com/products/kardiamobile6l

 

[Exchme]

I, also, have had permanent AFIB for at least 25 years... perhaps 5 years longer than that.

I, too, am asymptomatic (which is why I don't know how long I've had it) and had no change in symptoms in all that time.

I take Warfarin for which I have zero co-pay rather than the outlandishly priced other blood thinners. (And, of course, a Beta Blocker.)

My cardiologist, also, recommends against surgery. He did, however, try to get me to consider the "Watchman" device to replace the Warfarin. I considered it but will pass... only because of my friendly relationship with Warfarin.

https://www.watchman.com/en-us/home.html

My cardiologist wanted me to get an AppleWatch, he said it was studied and found to be 94% accurate in detecting AFIB. Since I don't have an iPhone and haven't had any AFIB episodes since the ablation 2.5 years ago, I haven't done that, but if I wanted a cool toy, I could justify it - "But Honey, it's for my health!"

 

[RonBoyd]

My cardiologist wanted me to get an AppleWatch, he said it was studied and found to be 94% accurate in detecting AFIB.

I don't think you understand. The "Watchman" is an implanted device that is put in the left atrial appendage of the heart. It is not a wristwatch and definitely not a toy.

https://www.watchman.com/en-us/home.html

 

[accountingsucks]

I knew nothing about AFIB until this year when my 82yo mom had her first incident requiring hospitalization. Cardioversion was succesful. She had a few other incidents requiring the hospital and in couple cases it reverted on it's own, one needed cardioversion.Her heart rate is naturally very slow, so beta blockers did not work for her as she would feel like passing out. So they installed a pacemaker to increase her natural rate. Unfortunately she had a very rare complication appearing four days after placemaker installation. She had a cardiac effusion and it is 100% fatal if not corrected in time. At one point her BP in the ER was 45/34....I was there to see it all. She finally was transferred to a facility where they did open heart surgery (paramedics initially refused to transfer her and she would have died in about 1-2 hours).

I don't want to scare anyone but if you get a pacemaker watch very closely for any symptoms. The day after her pacemaker installation she admitted after that she felt abit dizzy and off. The only drug that seems to work for her is Amiodarone which is a very hazardous drug long term so next week she will discuss ablation with her cardiologist. I did ask right at the start why they didn't consider an ablation and I guess at her age they would prefer to try the drug route first

 

[Tekward]

OP Here. Thanks for the well wishes.


TEE is Monday to be certain about clots before the ablation Tuesday.


For background, over the last week my apple watch has provided 30 AFIB notifications and 38 Low HR (<40 BPM for 10 minutes) notifications - all asymptomatic.

 

[Richard4444]

I was diagnosed with aFib 5 years ago and I then had a Chads-Vasc score of 1, the risk of harm from Eliquis (bleeding internally) was equal to the risk of harm from aFib (both approx 1% annually), so no treatment. Three years later, I also developed aFlutter along with aFib 16% of the day (4 hours daily on average): I had an ablation almost 2 years ago, wear an implantable loop recorder, and so far, so good. I felt confident with the ablation as the electrophysiologist had done "well over 5000" ablations. And after the successful ablation, off all cardiac meds including anti-coagulants.

Rich

 

[AnneG]

I don't think you understand. The "Watchman" is an implanted device that is put in the left atrial appendage of the heart. It is not a wristwatch and definitely not a toy.

https://www.watchman.com/en-us/home.html

The Apple Watch (a smart wristwatch) is different from the Watchman device. The Apple Watch can detect abnormal heart rhythm - that's what he was referring to.

 

[51togo]

Thank you for sharing the article and Best wishes on your recovery!
My Afib was detected in a routine EKG check up. Then I was given Xarelto, after six months on Xarelto I had dark urine. I had my first ablation but was unsuccessful, short after the surgery Afib returns, in additional I also had an racing heartbeat of 200 where I had to be monitored in the ER which took them 3 days to lower the heart rate. My surgeon suggested a second ablation, during the procedure I had Afib where took 5 hours but was successful. That was 8 months ago, no Afib since 2nd surgery I also got a loop monitor and off Xarelto &#55357;&#56911; . The cardiologist also send me to do a sleep study where determines I do have sleep apnea so now I’m using the cpac machine. My daughter gave me an Apple Watch which I found it useful in checking my heart rate and Oxygen level while it saved the data to the iPhone. Generally healthy I was quite surprised that I would be under the care of cardiologists, but I’m grateful of the quality of care I received and medical advancement in this country.

 

[mwacheson]

Afib

I went to the ER in March of 2018 at 62. My heart rate was racing at 157 and I was having trouble breathing. They tried cardioversion twice but failed both times. I went on heavy medication to control my heart rate until I had my 1st ablation in May of 2018 It lasted about a year and then I had a 2nd ablation in 2019. I still take medication for my rythmn and other meds as well because I have congestive heart failure as well. I retired when covid hit in 2020. Fortunately I was in a good financial position when I retired at 64. Enjoying retirement with my wife and doing a lot of traveling while we can.

 

[meleana]

A few weeks ago my husband was in the basement and came upstairs to use the bathroom. He collapsed - face planted- by the doorway non responsive. I called 911 and he woke up and got himself on the toilet. He had urinated on the floor where he fell, but he felt like he had to have a bowel movement and was in pain.

The paramedics said he was in AFIB and off to the hospital he went. He was in pain from constipation. Could barely speak. They had him hooked up so he couldn’t use a bathroom, though he couldn’t walk anyway.

He finally just “went” in the hospital bed and the AFIB warning came off the monitor.

They did lots of cardiac tests. Kept him overnight. All tests were good.

Followed up with his primary doc. Referred him to get a heart monitor and is using it for 30days and then will mail in. Takes many weeks to get the results.

Hoping he will not have to take blood thinners. He’s never felt anything unusual with his heart ever.

 

[Koolau]

A few weeks ago my husband was in the basement and came upstairs to use the bathroom. He collapsed - face planted- by the doorway non responsive. I called 911 and he woke up and got himself on the toilet. He had urinated on the floor where he fell, but he felt like he had to have a bowel movement and was in pain.

The paramedics said he was in AFIB and off to the hospital he went. He was in pain from constipation. Could barely speak. They had him hooked up so he couldn’t use a bathroom, though he couldn’t walk anyway.

He finally just “went” in the hospital bed and the AFIB warning came off the monitor.

They did lots of cardiac tests. Kept him overnight. All tests were good.

Followed up with his primary doc. Referred him to get a heart monitor and is using it for 30days and then will mail in. Takes many weeks to get the results.

Hoping he will not have to take blood thinners. He’s never felt anything unusual with his heart ever.

I assume he's taking steps to deal with constipation. Best thing I've discovered is psyllium fiber. Curious if his docs have made the connection between AFIB and constipation. I had not heard that before, but, why not?

By the way, with certain exceptions, blood thinners aren't that big a deal for most people though YMMV.

 

[meleana]

I assume he's taking steps to deal with constipation. Best thing I've discovered is psyllium fiber. Curious if his docs have made the connection between AFIB and constipation. I had not heard that before, but, why not?

By the way, with certain exceptions, blood thinners aren't that big a deal for most people though YMMV.

Actually he normally is not constipated. That’s the weird thing. And he did have to go to the bathroom. We don’t know why after he woke up, he was constipated.

I did read some abstract on the Internet regarding the relation between constipation and afib. His doctor said they don’t know if one causes the other or the other way around if at all.

I know blood thinners can be taken safely, but we’d rather he not have to take them because they are for life and they’re expensive.

 

[RonBoyd]

I know blood thinners can be taken safely, but we’d rather he not have to take them because they are for life and they’re expensive.

Yes, they are "for life." (or at least that's what I have been told and have no reason to dispute.)

Yes, the newer drugs can be quite expensive (well, duh... can't cut into the high -- U.S. -- profit business model). However, prior to this year my co-pay (Medicare) was $10 for a 90-day supply -- it is now $0

I have elected to have my INR monitored every 8 weeks during a doctor's office visit which prior to this year was $15 and now is $0. Other options are to test it yourself which does have a cost or the "watchmen" device (which I mentioned in an earlier post) which is basically a one-time charge.

FWIW, I have been on Warfarin (Coumadin) for over 25 years and have not had any adverse effects (knock on wood).

In any event, a blood thinner of any type costs less in the long run than having a stroke... perhaps even a fatal one.

 

[meleana]

Yes, they are "for life." (or at least that's what I have been told and have no reason to dispute.)

Yes, the newer drugs can be quite expensive (well, duh... can't cut into the high -- U.S. -- profit business model). However, prior to this year my co-pay (Medicare) was $10 for a 90-day supply -- it is now $0

I have elected to have my INR monitored every 8 weeks during a doctor's office visit which prior to this year was $15 and now is $0. Other options are to test it yourself which does have a cost or the "watchmen" device (which I mentioned in an earlier post) which is basically a one-time charge.

FWIW, I have been on Warfarin (Coumadin) for over 25 years and have not had any adverse effects (knock on wood).

In any event, a blood thinner of any type costs less in the long run than having a stroke... perhaps even a fatal one.

Yes. I know. But his doctor does not like coumadin. He says its a terrible drug and you have to get blood drawn every month, etc. Coumadin is the cheap option for my husband as well but…

But of course if we have to pay for the more expensive drug we’ll do it.

 

[Cayman]

There have been quite a few questions, statements in this thread about the 3 most common blood thinners Eliquis, Xarelto and warfarin. I found the just released results of a new clinical trial helpful.

A new UofM study finds Xarelto associated with higher risk of bleeding complications. (link below)

“We found the highest rates of bleeding among patients who took rivaroxaban, followed by warfarin and then apixaban,” said Jordan K. Schaefer, M.D., first author and clinical associate professor of hematology at University of Michigan Medical School.

“We followed patients for over two years on average and were able to compare apixaban to rivaroxaban, something that has not yet been done in a randomized clinical trial. While the findings should be confirmed with randomized studies, they may have implications for providers as they select anticoagulants for their patients.”

https://www.michiganmedicine.org/he...associated-higher-risk-bleeding-complications

 

[Cayman]

Yes, they are "for life." (or at least that's what I have been told and have no reason to dispute.)

Yes, the newer drugs can be quite expensive (well, duh... can't cut into the high -- U.S. -- profit business model). However, prior to this year my co-pay (Medicare) was $10 for a 90-day supply -- it is now $0

I have elected to have my INR monitored every 8 weeks during a doctor's office visit which prior to this year was $15 and now is $0. Other options are to test it yourself which does have a cost or the "watchmen" device (which I mentioned in an earlier post) which is basically a one-time charge.

FWIW, I have been on Warfarin (Coumadin) for over 25 years and have not had any adverse effects (knock on wood).

In any event, a blood thinner of any type costs less in the long run than having a stroke... perhaps even a fatal one.

RonBoyd not trying to change your mind about warfarin, I see that you're pleased with it. To add to the discussion, anyone who is interested in Eliquis and has commercial insurance can go to the manufacturer's website and create a discount card. The manufacturers card means the bearer pays a maximum of $30/ mo for Eliquis. Some here may find the safety profile of Eliquis (Apixaban) preferable to other anticoagulants available. I've been on Eliquis for 5 years with no issues, appreciate the convenience of not needing INR tests, and a lower bleeding risk for me than warfarin or Xarelto (per my cardiologist and hematologist)... for $30/month.

Thank you all for sharing info here, I find it helpful to hear your stories and then consult with my physicians about my circumstances.

 

[RonBoyd]

Yes. I know. But his doctor does not like coumadin. He says its a terrible drug and you have to get blood drawn every month, etc. Coumadin is the cheap option for my husband as well but…

But of course if we have to pay for the more expensive drug we’ll do it.

I can only speak to my own experience with Coumadin.

Did your doctor mention what he "didn't like" about Coumadin/Warfarin. There are lot of things I don't like but that doesn't mean there is anything wrong with them as YMMV is so true.

Yes, it is true that the monitoring can be a personalized thing and if was necessary on a monthly basis (or weekly or sooner) than a change of cure would be in order but that is a personal thing unrelated to Warfarin/Coumadin formulation.

 

[Cayman]

I can only speak to my own experience with Coumadin.

Did your doctor mention what he "didn't like" about Coumadin/Warfarin. There are lot of things I don't like but that doesn't mean there is anything wrong with them as YMMV is so true.

Yes, it is true that the monitoring can be a personalized thing and if was necessary on a monthly basis (or weekly or sooner) than a change of cure would be in order but that is a personal thing unrelated to Warfarin/Coumadin formulation.

My hematologist didn't say she doesn't like warfarin. All drugs have pros and cons. There are quite a few scientific studies comparing efficacy and safety of blood thinners. This would be something to discuss further with a medical expert if you have any questions about it. I wanted everyone to know that Eliquis is very affordable at $30/month with the manufacturer card.

Ok - just noticed that you meant your question for Meleana.

 

[51togo]

When I was on Xarelto and had several brown urine episodes. I attempted to switch to Eliquis, however pharmacist quoted something like $400+ for 90 days. I questioned the cost but he confirmed that’s the pricing under Medicare is that expensive. When I use the Eliquis site and put in Medicare, that disqualifies the manufacturer card. Xarelto does have a discount of about $250 for 3 months supply while bill to your credit card. But you have to pay the first 3 months of the year under your own insurance. Either way I understand that first 10 drugs subject to Medicare price negotiations include diabetes, heart failure and rheumatoid arthritis treatments, among others. And both Xarelto and Eliquis are in the top 10 list. Won’t take effect until 2026 tho.

 

[Koolau]

Actually he normally is not constipated. That’s the weird thing. And he did have to go to the bathroom. We don’t know why after he woke up, he was constipated.

I did read some abstract on the Internet regarding the relation between constipation and afib. His doctor said they don’t know if one causes the other or the other way around if at all.

I know blood thinners can be taken safely, but we’d rather he not have to take them because they are for life and they’re expensive.

Yeah, tell me about the cost! DW and I BOTH take Eliquis! We could fund a pretty nice vacation for what we pay for just that one drug. BUT knowing several stroke survivors (and some who didn't) I'm willing to pay the price.

All the best to you and your husband.

 

[O2Bfree]

I did read some abstract on the Internet regarding the relation between constipation and afib. His doctor said they don’t know if one causes the other or the other way around if at all.

The Valsalva Maneuver—bearing down as if trying to go—can end tachycardia episodes, so there is no doubt some sort of connection there.