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I was diagnosed yesterday and was told that everytime I am in Afib I can throw a clot and have a stroke or heart attack!! I am scared to death and need some reassurance and is there anything they can do to control them. I don't have an appointment with my cardiologist until next week. My PCP sent me to the ER. I am afraid to move..
MarkN, May 1, 2018 4:27pm EST
Well, I had undiagnosed A-Fib for probably 5 or more years before I got an official diagnosis. Even then episodes were about 12 hours long a couple times a month. My EP had a formula that he used to determine the risk with/without anti-coagulents and my risk was low-moderate. Then, in 2013 I was diagnosed with Coronary Artery Disease, had a quadruple bypass and went into A-Fib during recovery, which is apparently quite common. I was given Amioderone for a couple months after the surgery but the A-fib persisted at the same frequency. After two more years I opted for Xarelto even though it was potentially expensive and at that time didn't have an antidote. In 2016 I had a mild heart attack and found out that two of the bypass arteries had failed. My A-fib persists, usually at the same frequency but has gone as long as 3 months between episodes. It's mildly debilitating at the onset but gets better as it goes along. It's not changed my lifestyle much. I am a bit tired and lack energy when I have an episode but I try to keep a normal schedule and sleep pattern. Most of my episodes occur at night while I'm asleep. I have always exersized regularly, my weight is a bit high but manageable and I'm losing some a bit at a time, I eat OK, not perfectly but normally with an emphasis on plant based stuff. (I do still eat red meat, chicken, etc.) I do what my GP/Cardiologist tell me to do and try to take care of myself, take responsibility for my health care and live life because it just keeps on going.
Sometimes you just can't help the cards you are dealt and you have to learn that while it is very scary to have this it isn't a death sentence. Blood thinners will mitigate your stroke risk which is most important from what I understand, you just have to be a little more mindful of risk. So, the point of this discertation is just to let you know that you are not alone. People live with this for years and years with no serious consequences. I'm no expert when it comes to A-Fib but I've lived with it for 10+ years and know the affect it can have. I also know that you can live a normal life with it. Remember that it can control you if you let it or you can do what you can and control your own life. Best of luck and keep your chin up.
mdlagas, May 1, 2018 8:12am EST
Another result of the ambulance chasing lawyers on TV saying SUE, SUE, SUE, is that some doctors are either afraid to prescribe certain drugs because of the possibility of being sued. In my case, the first time I went to the ER with AFIB, the cardiologist who eventually saw me repeatedly asked me if I was going to sue him if he put me on an anti-coagulant. I felt like he didn't believe me when I said no. He continually went on about how may people end up suing doctors for malpractice when they are "just trying to do the best they can for their patients." Eventually, the AFIB stopped on its own and he decided not to prescribe the anticoagulant. The only thing he really succeeded in doing with his "treatment" of me was scare me off. I didn't have another episode for 2 years but when I did, I made sure that I saw a different cardiologist.
CharlieC, April 30, 2018 9:03am EST
Hey Debbie - Welcome, and everyone on this site can sympathize with your feelings. I have had Afib for about one and a half years now and am on Xarelto and Cartia XT (a rate control drug). I started of on Eliquis but it made me feel terrible so my cardiologist put me on 2 baby Aspirin to control blood thinning. Eventually, he put me on the Cartia/Xarelto combo.
My biggest issue is anxiety about having another Afib episode so my PCP prescribed LORAZEPAM to help calm me down. That seems to work but I try not to take it if I can. I also find that regular exercise, like walking, helps.
Also, just hearing from other folks on this site helps. So, hang in there!!
MellanieSAF, April 30, 2018 7:51am EST
To echo TR, the FDA would not have approved these drugs without a reversal agent if they considered the bleeding risk to be serious.
DO NOT LISTEN TO THE AMBULANCE-CHASING LAWYERS ON TV! They are just trying to get into the deep pockets of the drug companies and if they scare you into stopping taking them, they are doing a lot of damage to you (as well as their intended target, the drug companies)!
Besides, we expect an answer this week or next from the FDA on the Portola reversal agent for Eliquis, Xarelto, and Savaysa as May 8 is the PDUFA (decision) date set by the FDA.
TR, April 30, 2018 6:18am EST
There actually is something to counteract a bleed while taking Eliquis. What you have heard is there is no antidote foe a bleed while taking Eliquis. An antidote is one drug that when administered counteracts the aticoagulent effects of the drug you are takiing(eliquis, Xarelto, etc). In the case of Eliquis, it takes a combination of drugs to stop a bleed, instead of one, but the same result is achievable. Think of it in these terms. These drugs would never have been approved for use if you could just bleed out. Additionally, many of us have had ablations where they enter the largest vein in the body and feed catheters up into your heart. This is done not only while you continue to take Eliquis, but they add another anticoagulent called Heparin. Ask your cardiologist about it. Eliquis has a very good bleed record, probably the best of the NOAC's.Again, these things would never have been approved for use if there wasn't a way to stop a bleed.
Spencer, April 29, 2018 7:54pm EST
Debbie - welcome to the forum. So... what to say to someone new with AFib? Well first - PANIC! No sorry. I need to keep those little voices in my head and not let them out. It's a struggle sometimes. They always want me to do things... that I shouldn't. First, I would take two glasses of white wine and relax. First, many of us have had AFib for a number of years and this is something that you can live with and that medicine today can help to cure you of. I have had AFib for about 8 months now and have had a tough time of it, 8 but I have survived... despite my doctor trying to kill me off six times. I understand, my wife tries like weekly. The best advice is to take the drugs the doctor gives you especially the blood thinners. This will reduce your risk of stroke and many of us, if not most are on them now. Make sure to tell your other doctors that you are on blood thinners and especially if you end up in the ER. I wear a medic-alert bracelet that warns doctors of my blood thinners and my AFib status. I still chafe at this fact but that is another discussion.
When do you see your cardiac doc/EP? Sooner is better than later as Jean said. Catching this early helps quite a bit. Many folks go for years with this condition but are very asymptomatic and when we become symptomatic it is difficult to cure. Post a list of questions that you plan to ask.
Please tell us what the doc tells you when you see them next. We will also expect updates on how you are doing. This board is very supportive and I have gained more knowledge about my condition than from my doctors that I have seen. Reach out to us and we will help you understand this condition and help you through it all. We are all here to support you.
Waiting for my Sunrise.
Jeanamo815, April 29, 2018 5:30pm EST
Welcome to our forum, Debbie.
It is normal to feel" anxious when you are first diagnosed with atrial fibrillation. Being in the care of an electophysiologist (a cardiologist who specializes in the treatment of heart arrhythmias) is important so your case can be evaulated and the best medicines and/or procedures recommended. Most of us who have a-fib are taking an anticoagulant (blood-thinner). One of the newer anticoagulants....Pradaxa, Eliquis, or Xarelto are usually prescribed. There is now a reversal agent for Pradaxa and there should soon be one approved for Eliquis and Xarelto. I take Eliquis since my electrophysiologist thinks that it is significantly better at NOT causing an intestinal bleed. I do not have any side effects from the Eliquis and have not had unusual bleeding or bruising while taking it for several years. It protects me from the risk of stroke which is greater with a-fib. There are other medicines that your doctor may prescribe for you.....rate control meds which control your heart rate...and rhythm control meds which control the irregular rhythm. Sometimes an ablation is recommended....and often this is a good option as it is thought that when an ablation is done "sooner" rather than "later" that there is a greater rate of success in controlling the atrial fibrillation. Before you go to your electrophysiologist/cardiologist, make a list of things that you are concerned about...and questions you may have....and hopefuly, he/she will be able to give you the information you need. A-fib affects each of us individually....so sometimes there is a "trial and error" period with medicines because what works well for one person may not work for another.
You will also find information and support in this forum as we share our experiences so that you will know for sure that you are "not alone". We are glad to have you join our forum and hope you will continue to post here to let us know how you are doing.
Best wishes to you!
(My A-fib Experience Community Leader)
Edhammer, April 29, 2018 5:02pm EST
I use Eliquis after getting tired of warfarin and its monitoring. I have dealt with a few cuts with superglue and more recently with a clotting product I got at Walgreens. It’s a powder that you just sprinkle on. Burns a bit but stops the bleed. My partner was aghast at the superglue method. She’s more comfortable with the clotting powder.The continual bruising is something you’ll learn to deal with, too.
we are all glad to provide what insight we have to folks on this journey.
debbiewade, April 29, 2018 4:54pm EST
Thank you for the replies. I am concerned about Eliquis only because there is nothing to counteract a bleeding episode except to hope you don't bleed out as it takes 12 hours to leave the ssystem. I heard Xeralto (sp) was a good choice. coumadin I know that you have to be checked frequently. Thanks for the reasssuring answers. I am hoping to get into my cardiologist Monday or Tuesday.
Edhammer, April 29, 2018 4:13pm EST
There is some potential to throw a clot and have a stroke, but it’s probably only after a significant episode. As Cindy said, most of us are on an anticoagulant that will protect against clots. You do need to see a cardiologist, preferably an electrophysiologist who will help you.
The first time I experienced an afib episode I was terrified. I had no idea what was going on. After six months of every week or two, it has become less frightening. I’m certainly still concerned.
My advice is if you feel an episode, get to an emergency room. They are well equipped to address it, generally with IV medication.