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In need of encouragement
I was diagnosed with AFIB on May 10th, 2019. I am 42 years old, and I am a single parent to my five year old son. I am terrified. I don’t know what the future holds for me with this condition. I have never been ill before and never been on meds until now. I’m now on Eliquis and Amiodorone. When I first began taking theses meds last week they made me nauseous and gave me headaches that wouldn’t subside. I work in corrections and I’m afraid to be in such an aggressive environment while on blood thinners. I have to work and make a living. I’m also scheduled to start nursing school in September. Due to AFIB, should I put School on hold. I want to see my son grow into a man. I feel devastated by this diagnosis. I see a EP at The University of Chicago Hospital in June. What kinds of questions should I ask!!! I thank everyone in advance for their time.
Edhammer, May 21, 2019 11:26pm EST
Welcome to this forum. It’s a welcoming place with folks with lots of experience and support.
I was diagnosed with paroxysmal Afib in September 2017. I had a heart attack a few weeks before getting the diagnosis. Scared the dickens out of me.First episode went for several hours. I ended up flat lining for several seconds and then returned to normal rhythm. Weird feeling seeing everything go dark as I hear the nurse call for the code cart. As episodes continued into winter and then spring, I had an ablation and after a couple of hiccups, I’ve been free of any more episodes. Yes, the blood thinners are an issue. But they beat having a stroke. The condition is at least disconcerting. At most terrifying. But it in itself is not life threatening. It can be exhausting. I was pretty symptomatic. No chest pains, but I could really feel the beat.It effects everybody differently. People don’t understand how disconcerting it can be. Those on this forum do.
Being in corrections might be a bit tricky depending on how afib manifests itself for you.
advice: try to go with the flow. Get a good cardiologist who is also an electrophysiologist. Feel free to chat on this forum.
Bm3264, May 22, 2019 7:07am EST
I'm 53 and was diagnosed with afi b around your same age. I was on eliquis, metoperol, and two current anti arrhythmia drugs. I also had 2 cardioversions and finally an ablation in November 2018. Since the ablation, I have had no afi b episodes and have been taken off elliquis. Hang in there
Thumper2, May 22, 2019 8:13am EST
Salitria1, amiodorone can be a nasty medication -- ask your UofC EP about it! I hope you do not have to put nursing school on hold! Do your research on AFib, ask questions, and don't be afraid of an ablation, if your EP thinks it would help your situation. Keep reading here! All the best--
BethClark, May 22, 2019 9:13am EST
Sorry that you've had to join our group. Most--if not all--of us have gone through that period of high anxiety when first diagnosed. Being diagnosed with AFib is a scary thing, but it does get easier the more that you learn about it. When I was first diagnosed my cardiologist told me that if I had to have a heart problem this was the best one to have, that people can live normal lives with this problem. It might take a while for your EP to come up with the right treatment for you, everyone is a bit different as to their response to different medications and treatments. Having gotten an appointment with an EP is excellent. Typically people are started on medications but there are other options like an ablation. (Sometimes it takes multiple ablations). I was very surprised to read that you have been started on amiodorone. As Thumper2 said, it is a very nasty medication that can permanently affect many organs. Absolutely ask your EP about it. Your situation is certainly trickly being on a blood thinner in an aggressive environment. My understanding is that the determination of whether you need to be on a blood thinner is determined by your CHADs score. A CHADs score is your risk factor for a stroke, as determined by a number of factors. For me age and being female bumped me into the yes for blood thinner category. Unless you are highly symptomatic and your doctor can't get your AFib in control, I wouldn't put off nursing school. I've had only two aFib episodes, the second one 4 months after the first. The doctor put me on metoprolol and a blood thinner when the first one occurred and added Flecanide after the second one occurred. That was four years ago; I've had no episodes since. It's been a journey for my anxiety to subside, and still is but at a much lower extent. I still haven't traveled except on an overnight trip with friends. But for the most part I just take my meds each day and don't think much about it. One thing that gave me a lot of anxiety in the beginning was not really knowing what I should do if I had an episode. Would it stop on its own, should I take more medication, should I go to the ER? I'm also single and I worried about how I would get to the ER if I had to go. Figure that out ahead of time. There's always the ambulance. But then you need a plan for getting home. Be sure to ask your doctor about what you need to do; having a plan helps to lessen the anxiety. Part of your plan needs to include how to get care for your son while you're temporarily out of commission. Good luck. Keep on reading and posting and let us know how it's going.
TR, May 22, 2019 10:59am EST
I agree with Beth that one of the most imortant things to consider is to plan in advance how you are going to handle an episode. For every doctor you ask you will get a different answer. After prodding my EP for an answer, he said, "when you're in AFIB, you will probably feel lousy, but that alone should not send you to the emergency room. On the other hand, if you feel really, really bad, as in passing out or bad chest pain, or extended high heart rate(over 150 for say twelve hours or more and you feel really bad), then go to the ER. Using this type of guidance, I was able to ride out the episodes without going to the ER. Another thing to ask, why are you on amiodorone already, this is usually the drug of last choice. Even though it is probably the most effective anti arrythmic drug, it has the worse side effects. Keep the faith, ablations are pretty effective at treating AFIB, and even though sometimes it takes two to get it done, they are not that bad of a procedure.
DkinAA, May 22, 2019 12:04pm EST
Salitria, the responses before mine have very good advice about treatments - especially about getting medication help from an EP. Not only is this a very individual condition, reactions to specific drugs are very individual as well, so work with your EP to find what works best for you. Anxiety comes with afib - and for many of us, anxiety can trigger afib. So learning to relax and accept the situation can really help. If the stroke risk is under control with an anticoagulant, that is the most important thing - the afib symptoms feel awful, but can be overcome, not just with drugs or procedures, but other things can help - like treating sleep apnea, sleeping better, losing weight, better diet, less alcohol, de-stressing as much as possible. With time, it gets better for most people. There's lots of good information here in this forum and especially in the stopafib conference videos.
About the bleeding risk from the anticoagulants - having had some GI bleeds, my experimence has been that an ER can handle it -- the drugs like Eliquis wear off quickly -- in my cases, they basically just monitored me while the bleeding stopped by itself. Now there are reversal drugs available as well. A fair trade for the lower stroke risk. Trying to be realistic about my situation, I made a couple of lifestyle adaptations (1) accept that I might have to head to the ER at any time, so I think of it as a routine thing to do. (2) be more careful than before about walking to work when the sidewalks were icy - banging my head on concrete would not be good especially when on an anticoagulant. Getting good ice cleats and driving when necessary was a good solution.
Good luck and keep posting!
Salitria1, May 22, 2019 4:14pm EST
I want to thank you guys for taking the time to respond to my post. It is a comfort to be able to communicate with someone who understands what your going through. This AFIB diagnosis really has been torturing my thoughts. As I said before I am a single 42 year old single mom and hope this condition can be controlled so that I can see my son grow up. I thank you guys again for your responses and support.
Edhammer, May 22, 2019 10:42pm EST
You are welcome. Questions that you should ask include ones about the experience level of your doc, what his experience he has had with younger patients, how he thinks this condition may progress. It seems that it does progress. You haven’t said whether you are episodic or in afib constantly. I was told that my paroxysmal would potentially become constant. You haven’t said whether you are symptomatic. Afib is a wide ranging condition that is different for most everyone.
Having a child has got to play a big role in figuring out managing things. I was diagnosed at 68. Having a little one is not something I’d want to navigate. Do you have a good support group?
remember, this is a condition that you can live with. It does not have to control every minute. But you do have to deal with it.
4BeatsSake, May 23, 2019 9:55am EST
Hi and welcome! I’m on Eloquis too. I also take half of a 5mg Temesta/Lorazepam which has really made a difference. This isn’t normal therapy, but I found out quite by accident while taking it for another temporary condition. I asked my doctor to keep me on it after I explained there was a marked difference in the occurrences as well as the strength of each event. I’ve been meaning to post my experience with this but there’s a lot going on in this life of mine. I’m 67 and retired from a demanding industry and have lived with afib even before it was called that!
As a child, I told my doctor it felt like a butterfly in my heart. It was diagnosed as merely palpitations. I lived 59+ years believing it was just palps that we’re gett stronger but the butterfly was still there. Finally I had to see a heart specialist here in Switzerland where I’ve lived for the last ten years. He diagnosed me and put me on the Eliquist 5x2x daily.
So, to me, afib is “normal” since I’ve had it since childhood. It’s good to know there are safe medications now that will help. Some people have opted for abalations etc, but personally I am choosing not to go that route in view of other non related medical conditions I presently have.
Live life ! Have fun and hug your friends and family. I’d tell ya to hug an inmate too but I’m sure that’s against regulations ;)
ciao 4 now
mdlagas, May 23, 2019 10:52am EST
I agree with Thumper2 about the Amiodorone. By the time I got and appointment with an EP, I had researched enough and seen enough comments in this forum that the only thing I would have objected to if my EP had suggested it would have been Amiodorone. There are other options and it may be trial and error but I was put on Flecainide and it has controlled my AFIB for over a year. There are side effects but I would rather deal with them than the feeling I get from AFIB. It is scary when it first comes up, but getting good advice from my EP and comments/suggestions in this forum had helped me. I hope you don't put going to nursing school on hold but whether or not you have to depends on what else you have going on. You don't want to overdo it and put too much stress on yourself. Also, one thing that helped my was paying attention to what I was doing when an AFIB episode started to find out and avoid my triggers. I set up a log to record when it started, what may have triggered it and how long it lasted. If you know what you were doing when an AFIB episode starts then it easier to understand what you can do to try to avoid episodes. Even with medication controlling my AFIB, I have found that there are a few things that will still trigger an episode (though much shorter that when I wasn't taking Flecainide) and I can then avoid doing that. It's good that you are already seeing an EP, my mistake was not seeing one for more than 2 years after my initial AFIB episode before making an appointment with one. I ended up in continuous AFIB for nearly 2 months before the EP put me on Flecainide after my first appointment with him. As mentioned in another post, this is something that you can live with. You may have to adjust to a few changes but don't let it rule your life but do whatever you can to reduce your stress and just keep going.