Atrial Fibrillation (AFib) Support Group
Atrial fibrillation (AF or afib) is an abnormal heart rhythm (cardiac arrhythmia) which involves the two small, upper heart chambers (the atria). Heart beats in a normal heart begin after electricity generated in the atria by the sinoatrial node spread through the heart and cause contraction of the heart muscle and pumping of blood.
Good day. I've been reading the posts for a few days now and thought it time to introduce myself.
I'm a WM, 59, diagnosed 7/2012. Unfortunately, I've had a "benign" extra heart beats issue since I was in my early 30s. That's why I didn't catch the change in my heart rhythm.
Even though I'm currently about 35 lbs overweight, I walk aggressively 6 days a week in the early hours of the morning. I was alone at 4:45am, over a mile from my house and had what was diagnosed as a TIA. A trip to the emergency room and a few days in the hospital followed.
Looking back the biggest disappointment was the lack of information and education I received while in house at one of the most internationally recognized hospitals in the US. I essentially left he hospital (unconverted) came home and started reading and searching via the internet. As we all know, a lot of the material is unbalanced on the dark side. Makes sense, doctors and clinicians aren't talking about those doing well, they're talking about the exceptions and the difficult cases. A horrible way to learn about afib.
About 7 weeks later, I went on Sotalol 120mg 2 x day and was cardioverted on the first try. Today, I continue the Sotalol with Xarelto (20mg) and 10mg simvistatin. Hard to remember I was taking absolutely nothing and weighed 35 pounds less before the TIA.
Since about October, when I was cardioverted, I've only had one episode of Afib (that I know of). It happened about 3 weeks ago abut 2am and lasted about an hour. Scared the crap out of me. To my knowledge, I've not had an episode since.
It's taken me a lot of time to come to grips with what I know is a progressively worsening disease. I've had to make some very big decisions about what I want to do the last years of my life. I have hope, but the reality is my longevity prognosis isn't very good. I like the rest of you, hope I can stay in NSR as long as possible, have as few ablations as possible and hope for better treatments or a cure.
Locally, I only have my mom who is in her mid-80s. My partner of 18 years had a ruptured aneurysm in 2012 and after 2 1/2 years of emotional hell, fighting for him with my all, I had to again place my poor brain damaged partner in a nursing home about a year and a half ago. It was about that time I developed afib. I live alone and most days, I feel isolated and a little bit lost. In spite of that, I really am an upbeat person; trying to re-invent myself for what time I have left. Although I work full time (at least for now), I try to do good for others and get as much joy out of life as I can.
If any of you just want someone to talk with, I'm a pretty good listener, please contact me. Thanks for reading my post.
Clay
I'm a WM, 59, diagnosed 7/2012. Unfortunately, I've had a "benign" extra heart beats issue since I was in my early 30s. That's why I didn't catch the change in my heart rhythm.
Even though I'm currently about 35 lbs overweight, I walk aggressively 6 days a week in the early hours of the morning. I was alone at 4:45am, over a mile from my house and had what was diagnosed as a TIA. A trip to the emergency room and a few days in the hospital followed.
Looking back the biggest disappointment was the lack of information and education I received while in house at one of the most internationally recognized hospitals in the US. I essentially left he hospital (unconverted) came home and started reading and searching via the internet. As we all know, a lot of the material is unbalanced on the dark side. Makes sense, doctors and clinicians aren't talking about those doing well, they're talking about the exceptions and the difficult cases. A horrible way to learn about afib.
About 7 weeks later, I went on Sotalol 120mg 2 x day and was cardioverted on the first try. Today, I continue the Sotalol with Xarelto (20mg) and 10mg simvistatin. Hard to remember I was taking absolutely nothing and weighed 35 pounds less before the TIA.
Since about October, when I was cardioverted, I've only had one episode of Afib (that I know of). It happened about 3 weeks ago abut 2am and lasted about an hour. Scared the crap out of me. To my knowledge, I've not had an episode since.
It's taken me a lot of time to come to grips with what I know is a progressively worsening disease. I've had to make some very big decisions about what I want to do the last years of my life. I have hope, but the reality is my longevity prognosis isn't very good. I like the rest of you, hope I can stay in NSR as long as possible, have as few ablations as possible and hope for better treatments or a cure.
Locally, I only have my mom who is in her mid-80s. My partner of 18 years had a ruptured aneurysm in 2012 and after 2 1/2 years of emotional hell, fighting for him with my all, I had to again place my poor brain damaged partner in a nursing home about a year and a half ago. It was about that time I developed afib. I live alone and most days, I feel isolated and a little bit lost. In spite of that, I really am an upbeat person; trying to re-invent myself for what time I have left. Although I work full time (at least for now), I try to do good for others and get as much joy out of life as I can.
If any of you just want someone to talk with, I'm a pretty good listener, please contact me. Thanks for reading my post.
Clay
Locally, I only have my mom who is in her mid-80s. My partner of 18 years had a ruptured aneurysm in 2012 and after
Steve
Sorry about the afib and TIA. Do you have your own electrophysiologist now? It would be a good idea. You can't always feel afib, so you can't know for sure if you are having silent afib. Are you taking an anticoagulant? If you've had a TIA, it is always recommended. If you don't know, there are 3 things in treatment of afib:
1) Anticoagulants (preventing stroke)
2) Rate control (heart rate) (drug that prevent heart failure)
3) Rhythm control (drugs or procedures to put you in rhythm)
Many of us are in afib all the time. Either 2 & 3 above can eliminate symptoms. I don't have any symptoms anyway, but I'm on rate control (and anticoagulation). If you do these things, afib won't shorten your life. Please read the words below from a well known electrophysiologist, bike rider, and afib patient. Try to be upbeat. With knowledge, proper treatment, and time, you will be back up to speed. Don't ignore your mental health. I would suppose your loss and now this (afib) can drive down your spirits... depression is common. But you can choose to be happy. You are too young to be thinking about checking out. petey
Here's the Mandrola quote:
Heres a sampling of twelve things that I often tell AF patients.
1. I am sorry that you have AF. Welcome to the club, there are many members.
2.I know how it feels.
3.Your fatigue, shortness of breath and uneasiness in the chest are most likely related to your AF.
4.AF may pass without treatment.
5.AF isnt immediately life-threatening, though it feels so.
6.Worrying about AF is like worrying about getting gray hair and wrinkles. Plus, excessive worry makes AF more likely to occur.
7.Emergency rooms treat all AF in the same way.
8.There is no cure for AF.
9.The treatment of AF can be worse than the disease.
10.The worst (and most non-reversible) thing that can happen with AF is a stroke. For AF patients with more than one of these conditions: Age> 75, high blood pressure, diabetes, heart failure, or previous stroke, the only means of lowering stroke risk is to take a blood thinner. Sorry about the skin bruises; a stroke is worse.
11.The treasure of AF ablation includes eliminating AF episodes without taking medicines. But AF ablation is not like squishing a blockage or doing a stress test. It will be hard on you. It works 60-80% of the time, has to be repeated one-third of the time and has a list of very serious complications.
12.If your AF heart rate is not excessive, its unlikely that you will develop heart failure. Likewise, if you have none of the 5 risks for stroke, or you take blood-thinning drugs, AF is unlikely to cause a stroke. In these cases, you dont have to take an AF-rhythm drug(s) or have an ablation. You can live with AF. You might not be as good as you were, but you will continue to be.
I try to treat each day as as gift; do as much as I can to find joy and live in the minute. However, as noted, I have to make some practical and logical choices for what time I have left. I'm so blessed to have the option of retiring late next year. Taking time to try to help others and just live the best possible life I can. As most of you know, that's fundamentally about people and relationships; not money.
Thank you to all who have posted now and in the past; I've already greatly benefited from this group.
Of course none of us knows what really is the final trigger that causes us to develop afib, or bring on that first episode, but the sadness that goes along with what happened to your partner sure sounds like a possibility. My first episode came several months after Mom was diagnosed with pancreatic cancer. I mean, for most of my life I ate like a 10 year old and drank too much, so I am sure that was a factor, but the first attack came after months of sadness and a lot of crying. That is what I thought of when I read the part about your partner's aneurism.
I am in semi-retirement now, and I can tell you, you will LOVE it! Your sound like a good person, interested in helping others. I simply want to watch Turner Classic Movies...and now I can! Listen to Petey, he gives wonderful advice. Your afib won't kill you (I say this, but of course I was SURE I was going to die when I had my attacks, and everyone on this site knows your fear). God bless and stay strong...and oh yeah, after I decided to have an ablation, my EP nurse said "STAY OFF THE INTERNET!" Because as you have seen, you will see lots of negative stuff online. But there is lots of good info too. Hang in there!
Bill
I am glad you introduced yourself to the group. I have found that the most difficult part of afib is dealing with the emotional and mental aspects of the disease rather than the physical aspects.
It looks to me that in practicing gratitude, living in the moment and helping others you have great tools for dealing with not only afib but also for acheiving happiness.
While these are great tools,the challenge is to always use them. I try to journal everyday on the things that I am grateful for; I meditate twice a day, and try to stay in the present but not always. Try watching a playoff football game and just focusing on the present is very challenging.
I don't know about your overall health but I would not automatically assume that afib is always a progressive disease. Petey can probably speak more to this including as I recall the rethinking of the saying "afib begets afib" in this years Boston AF symposium.
In addition, since you appear to have paroxysmal afib and have only had one episode since being cardioverted you appear to be doing pretty well according to your docs.
I think you have a lot to offer the group and look forward to your future posts.
opsyn
Anytime I'm feeling real strong, I go look up my meds and the latest news about Afib. I'm very excited about the FIRM trials and hope it's even more improved when I have to have an ablation. So after I've done my "afib update," I make sure to go out and do something fun!
If wasn't clear from my post, I discovered how toxic and harmful grief can be. I wish would have gotten professional help. Grief took over my life for a very long time. I'm very hopeful and much more positive now. Thank you Bill!
Looking at the cause of your afib, if it is identified by your doctor, and treating it may be more important. Like high blood pressure, for example.
petey
Sorry for all the misery you've had with A Fib.
The emotional part can be the hardest thing to deal with---at least it was for me.
It really helped me to find this site, and see how other people deal with this weird condition. After that, I didn't feel so alone, and started to have some hope.
Thanks for writing.
D.
Fortunately, other than being about 25 lbs overweight for the last 9 years, my BP and other blood work and vitals have been good. My heart has some "minor" enlargement, but nothing particularly noteworthy. Keeping my fingers crossed I can stay NSR as long as possible.
Again, thanks everyone for the support.
Clay
Welcome to the group. Glad to have you with us.
Annette