Depressed about Afib

I was on my way home from the store after being excited about making smoothies, trying healthy recipes, etc., when I got a call from the EP's nurse saying I had an episode of afib that showed up on my home monitor check which lasted 10 hours and the EP was suggesting blood thinners.  Found out Eliquis is $47/month/prescribed medicine by EP.  I became sad, worried, and full of doom and gloom. Generally I'm a very happy and active person, love estate sales and selling vintage items on line, but this news has made me afraid, not knowing when or if it will happen again.  Does it mean my heart is even more damaged (had pacemaker implanted 10 years ago due to bradycardia)?  Also had breast cancer twice and things are stable and just trying to enjoy my life. It's so hard sometimes to deal with these serious issues and it feels like there's more and more pills to take with every diagnosis. Can anyone share some positive thoughts or advice? Thanks so much!  


13 Comments

Lots to learn

by AgentX86 - 2020-01-14 10:52:02

Yes, you do need an anticoagulant. Eliquis is the best but there are cheaper. You're not seeing the entire cost of Eliquis, either. I'm looking into Medicare and in the "donut hole" I'll be paying $1400 for a 90-day supply. Warfarin is cheaper than dirt but requires constant monitoring and has a far higher bleed risk (bleeding in the brain is serious stuff). If you're on private insurance, you can get a manufacturer's discount card that'll drop the cost to $20 or $30, can't remember. The possible good news is that a generic abpaxiba  was just approved so hopefully the cost will come down.

It sounds like you're asymptomatic, so AF shouldn't slow you down. Afib itself isn't life threatening or even dangerous. Often high heart rates are part of the package and that must be treated aggressively. Extended periods of a heart rate above 100bpm is dangerous and WILL lead to cardiomyopathy.

As noted above. The other problem is blood clotting in the heart and moving to the brain (instant stroke). Take an anticoagulant religiously and that chance is greatly reduced. You need to be on one now, even if your Afib episodes are only occasional.

The bad news is that Afib almost always gets worse. The good news, if there is any, is that something like 1/6 of the people will get it during their lifetime . You've joined that club. There are treatments but you need an EXCELLENT electrophysiologist to deal with it.

 

be happy

by Violet West - 2020-01-14 12:15:00

that your cost is only $47 a month.  That's cheap!  My blood thinner (Xarelto) costs c. $450 per month . . . unless I get it on the sly from Canada.  Via Turkey.  

AFIB sucks.  Although, as Agent 86 mentioned above, it is not "life threatening or even dangerous" it certainly was disabling for me, and in the end, caused a permanent way too fast hearbeat, which can lead to heart failure.  Which is life threatening.  Hence, pacemaker.  I feel fine now. 

SOME POSITIVE THOUGHTS

by Gemita - 2020-01-14 13:38:59

Holly, let us put a “positive” note on all this first.  Fortunately your AF has been discovered before it caused an AF related stroke which is how many people first get to discover they have AF.  Secondly AF (which both my hubby and I have the pleasure of having) has made us both think very seriously about our lifestyle and how we can improve upon our already healthy one  At this rate, we shall be living forever, and so will you too if you continue with your smoothies, healthy recipes etc.  This is not the end of your life, only the beginning.

To feel sad, worried and full of doom and gloom will generally bring on my AF so I would strongly advise you to replace these thoughts with positive ones and you do seem to be a positive person.

It may not mean very much for you if you can control it. Uncontrolled AF will become progressive and may cause symptoms of breathlessness, chest pain and dizziness, especially at high heart rates (and low ones too) because AF can occur at low, normal or high heart rates, although it is an irregularly irregular arrhythmia.  The problem with AF is that it can remodel our heart tissue (cause scarring) and map out lots of additional pathways and send electrical signals all over our atria and where they shouldn’t be (? my way of explaining it all).  It then generates more AF and may eventually become persistent and then permanent.  If we can control it early enough it may not develop fully and we can live our lives most of the time feeling normal with the assistance of our pacemaker.

For me personally, AF is now firmly under control with only a low dose beta blocker and an anticoagulant (Edoxaban 30 mg) once a day because of low body weight - less than 60 kg - and my pacemaker is doing an excellent job of regulating my pulse (smoothing out long pauses and over powering ectopic beats - PACs) to prevent these from developing into AF and other arrhythmias.  When I first got AF I was truly frightened, especially having to start anticoagulation.  I imagined all sorts of things happening to me but with time and understanding, I realised that AF is a very very common problem and most people can live a normal life with it, when it is controlled and anticoagulation treatment, if required, is started to protect us from an AF related stroke.

I am happy to answer any queries you may have since hubby and I have a wealth of stories to tell between us and we are still here to tell them, so please no more worrying.  Find a good Cardiologist/EP you can trust and you will be just fine.

Life with atrial fibrillation.

by Selwyn - 2020-01-14 13:42:35

Here we are, with atrial fibrillation, for years, swimming miles, playing club table tennis ( sometimes the same day), and just about to go out dancing tonight ( having been for a swim this morning). Does the AF get in the way- no! 

A lot of people don't even know they have AF. Treatment is available if you have symptoms. Take the pills if offered. Whilst no one really likes to take pills, it is a small price to pay for having a prolonged active life.  If you really get problems with the pills there is always the option of ablation surgery for AF (Had this twice).

Sometimes  AF is intermittent, so called paroxysmal AF - the risk of stroke is perhaps similar to permanent AF. Paroxysmal AF may be caused by tiredness, alcohol, caffeine, too much exercise etc.  The etc. includes overactive thyroid ( have you had a check?) and salt and water balance.

I have been up to 5000 metres mountains  without any problems. I had to give up Scuba diving ( as I did not fancy an arrhythmia under water) , othwerwise active  life continues. I am looking forward to snorkelling with  whale sharks in the near future.  Life is for living, doing what you can, when you can. I find exercise very helpful for well-being.  A dynamic circulation will reduce your chances of further cardiovascular disease and cancer. You are a survivor, many others would have loved to be in your position.  

 

Depressed about Afib

by pogerm1 - 2020-01-14 17:38:34

Holly:

I have had Paraoxamal AF for almost 20 years, I didn't take any blood thinners during that time.  I didn't get too many episodes during many of those years and always went back into NSR on my own. I tried to eat healthy foods, I rasied most of my veggies, berries and fruits.  You don't get a stroke just because of AF, if it is not too long , but because of the other problems which you have like hypertenstion, diabeties, age, that is why we have the Chads scorce.  There are some natural things you could try like Nattokinase, Boluoke.  On the Afibbers.Org site there are a few people that have stopped their AF by eating Natto, some have stopped eating most calcium foods and taking Vit. D, others have gotten Ablations. 

I have recently gone into permanent AF because my thyroid went hyper, so I am going for a Cardioversion and I have been on a blood thinner these last few weeks, got a red eye, a rash (I don't know if it is from the blood thinner or from something else).  Hopefully the Cardioversion will work, if not I will try to look into getting a watchman so that I won't have to take these blood thinners, I am with you Holly I do not like this drug. 

Living with afib

by Theknotguy - 2020-01-14 21:03:39

I've had afib for quite a while - even prior to getting my pacemaker.  Post pacemaker has been better and I lead a "normal" life.  Just had to have my pacemaker adjusted because it wasn't keeping up with my lifestyle.  So you can lead a "normal" life with afib.  

Some things to ask your cardiologist and EP.  

My pacemaker is a Medtronic and I have two programs running on it to help with afib.  First is APP, second is Minerva. APP (Atrial Preference Pacing) watches for afib and, if it sees it, it will increase my heart rate.  Works about 10% of the time.  The second, Minerva, watches for afib and if APP can't handle it, it kicks in and changes my pacing.  It will pace me out of afib.  Works about 80% of the time.  My pacemaker is six years old and I don't know what they are doing on the new pacemakers.  It's a question to ask.  

My EP asked if I was taking magnesium.  It's an over the counter supplement.  I was surprised he mentioned it.  I'm taking it and it seems to work.  Another question for your cardiologist/EP.  

See if you have "trigger" foods.  Some people say alcohol, others chocolate.  I haven't found any that "trigger" my afib but others have.  

I take Eliquis (Apixaban) and ran into the donut hole they talk about.  That's where your coverage stops before the new year and you pay 100% out of pocket. Supposedly the laws have been changed yet again this year (2020) and there won't be a donut hole this year.  But I would check with your medical provider to see what they say.  

Main point being you can lead a "normal" life with afib.  It may take a while to get it under control but it can be done.  
 

More positive thoughts.

by Hoser - 2020-01-14 22:02:57

Right after implant in 1/2016 the EP called and said they detected 13 hours of 'atrial flutter' ( no wonder I felt like crap all that day) and that I needed to start on blood thinners.
 

I stayed on them for about 2 years and then asked the EP if I could stop them, as I hadn't had another episode since the very first one.

He told me to get an echo, and if the EF hadn't changed, I could stop them.  So I got off blood thinners as my EF was the same.

Keep track of your episodes, if it was a once and done deal you may get lucky like me.

Afib

by holly - 2020-01-15 06:04:28

Thank you everyone for your input regarding my afib.  It helps so much to hear your stories and know that I am not alone which has provided great comfort, and some of the information you have shared gives me a lot to think about and discuss with my EP.  So thankful for this group!

Blood thinners, strokes, and..

by AgentX86 - 2020-01-15 08:38:10

IMO, anticoagulants are essential for anyone with even proximal AF or AFL. The Watchman device is good but not perfect. At first it was only approved for AF patients who, for one reason or another, could not take anticoagulants. For those who can, it's still goodness but doesn't replace anticoagulants. I have my LAA clipped (better than a Watchman) but will still be on anticoagulants (apixaban) for life. 90% of the clots/embolisms originate in the LAA, but that still leaves the 10%. "Do ya'll feel lucky, punk?"

Strokes don't have to be killers, life threatening, or even noticed to change your life. Micro-clots can break off, travel to the brain, and cause what are called "micro-infarcts", or very small strokes. These slowly kill the brain and can cause dementia and other brain related problems. That's where I find myself now. The working theory is that before I was on anticoagulants, asymptomatic AF was causing these micro-infarcts and now they're manifesting themselves as seizures. Trust me, it's no fun for the patient or those around them.

A normal EF has nothing to do with this issue. A TEE can measure the flow in the LAA and see clots, if they exist at that moment, but it can't tell you the odds of a stroke.  The shape of the LAA matters too, from what I understand. ...but there's still that 10%.

interrupted - last thoughts

by AgentX86 - 2020-01-15 09:17:18

Donut hole: Nothing has changed for 2020 with regard to the donut hole. Medicare did "negotiate" prices with drug companies for some of these drugs but it's purely voluntary. It may or may not affect you. It may just push the donut hole later in the year.

The big change is that a generic for Eliquis has been approved by the FDA (nice Christmas Eve present). The generic may be available soon. Who knows what the pricing will be and I'm sure they won't give it away.

 

AgentX86

by Gemita - 2020-01-15 09:45:45

Blood thinners are obviously necessary but even so they are not 100% effective;  I was told more like 65%, so this still leaves us unprotected some of the time.  All we can do is to pay attention to lifestyle and reduce our risk factors like hypertension, diabetes, heart disease and so on and keep as fit as possible.  

I agree wholeheartedly with your comments about the devastation caused by small strokes.  Hubby has suffered these over the last several years and although no lasting physical damage has been caused, the affect on his mental well being has been immense.  I fear the worst sometimes, but I wont let myself go there.

On a positive note, it is important for Holly to drink lots of water.  One of the best blood thinners I know and keeping well hydrated will be good for many other conditions.

Hi Gemita

by AgentX86 - 2020-01-15 14:48:59

I think the NOACs are better than this but there is always a risk of brain bleeds that has to be weighed, as well. Someone very young with no other health risks may indeed be at a higher risk with anticoagulants because of brain bleeds than without anticoagulants because of stroke.

Eating right helps but in more physical ways than electrical (the metals are essential for the nervous system,  including the heart). This especially true if there are other risk factors,  like diabetes, as you say.

"Blood thinners" don't actually thin the blood, as paint thinners thin paint. They hinder various chemical reactions that allow blood to clot. Many of these clotting chain reactions are seven, or perhaps more, steps long. It's an extremely complicated process. Anticoagulants only interrupt one of these steps. Water doesn't "thin" the blood, in this context. Yes, it adds volume to the blood, which is really good when the vampires take samples for lab work.

Hydration is exceedingly important t for proper nerve conduction and kidney function. Hydration also tends to wash out minerals,  particularly as we age, so replacing them is very important,  as well.

Agent X86

by pogerm1 - 2020-01-15 23:14:40

if you have your Left Atrial Appendage "clipped", then it is required that you stay on a blood thinner for life.  Only if you have a Watchman then you won't need to take blood thinners, there is a better version of the Watchman coming out I believe this March.

Liz

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