News for Living With Atrial Fibrillation

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Introducing Our New Community Leaders

Good Afternoon!

We wanted to introduce you to our new My AFib Experience Community Leaders! We started a community leaders program  to ensure that all members of the community feel welcomed and supported. A few months ago, we had asked you to apply to be a community leader if you are interested. We have selected Jean (Jeanamo) 
and Roy (Rbrandt) for this role and know that they will do a fabulous job as they are very active members in the community forum.
 

Jean and Roy, can you respond to this post and give a little bit of your story?
 
Thank you!
Kristen, American Heart Association, and Mellanie, StopAfib.org
 

 
Posted by kristen.wadeAHA_ASA on Feb 7, 2017 2:30 PM CST

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Hello, Fellow "A-fibbers" and your families.  My goal as a community leader is to welcome everyone to the MYAFIBEXPERIENCE forum and to offer encouragment in my responses to your posts.  We do not seek to offer medical advice, but rather to offer information, shared experiences, encouragement and support.  My name is Jean (Jeanamo).  I am a 78 year old female...married with 6 adult chldren and 10 grandchildren. I am a musician...a retired public school music and choir teacher. I live in Texas.  My A-fib story began within the past decade with what I thought were anxiety attacks.  While in my primary care doctor's office, an ECG showed that I was in A-fib -----thus my A-fib journey began.  I was referred to a cardiologist who started me on medication and conducted numerous tests.  Next I began seeing an experienced EP (electrophysiologist).  My A-fib was paroxysmal so it would "come and go".  However, when I had an episode, I was very symptomatic and my heart rate would often exceed 200 beats per minute----and  off I would go to the emergency room.  To make my lengthly story shorter....I've had 2 cardioversions which only lasted a few days.  I tried several different medications which I did not tolerate well or which did not "work" for me.  One of the most important things we learn in this group is that A-fib is very individualistic.  We experience it in different ways and what will work for one will not work for another.  I had a pacemaker implanted so that the medicine I was taking did not cause Bradycardia (a very slow pulse).  Soon I had my first ablation. It was not completely successful and ultimately I required two more ablations.  The third ablation has been successful  for me since the fall of 2014.  I no longer take any rate or rhythm control drugs, but I do stlill take Eliquis as a safeguard against stroke should my A-fib return (which I believe will remain something of a possibility). This forum is important to me because the information and shared experiences here can benefit all of us dealing with A-fib.  I hope that as we "reach out" to others in this community, our A-fib journey will be a little easier for everyone.  I will do my best to serve as a community leader in this forum and hope to be able to address some of your concerns whenever I can. My heartfelt best wishes to all who are members and visitors to the MYAFIBEXPERIENCE site....and as my fellow community leader Roy always expresses...may we all stay in NSR. Warmest regards to all......Jean
  • Posted Tue 07 Feb 2017 04:13 PM CST
Hi everyone, my name is Roy and I am very honored to have been chosen as a community leader.  In a lot of the recent posts where Jean and I both respond we quite often say ditto to what the other has already posted and once again Jean has beaten me to the punch so I have to say 'dito' again in regards to what I see my role as community leader as. I will add one thing, I just decided a few weeks ago on my own to try and personally post a quick welcome to new members, I don't think I have missed any yet since I started, but if I have please let me know.  I  didn't know how many new members we get! I am a 65 year old male, married for 42 year as of tomorrow (February 8th) father of two a son and a daughter and have one Granddaughter (yes that's her with me shaking Chip's hand in my profile picture). I was diagnosed with Afib November 8th 2015.  I went for my yearly physical and the Doctor listened to my heart as the normally do at the start of things, said I want you to go down the hall and have an Ekg. Ok no problem I have had them before. I went back to the exam room and he came in and I could see by his expression he was troubled. I said what's wrong and he said " I want you to go to the ER now" I said what? He repeated it and said I had an abnormal heartbeat and he would send his own relatives if their heart was behaving like mine. Now keep in mind I didn't really feel anything real bad I was unusually tired but I though it was just my job and that it was driving me crazy.  Doc said he'd call an ambulance but since I wasn't dizzy or showing any other symptoms he'd let me drive there (2.5 miles) if I promised to go. I said I would but was going home first it was closer and my wife would drive me in from there. He frowned but agreed and gave me the ekg printout to give to the ER. I went to the ER and while waiting for what seemed an eternity in the waiting room the fact that I am going to be admitted to ER is starting to sink in and I'm now getting kind of scared. I'd never been admitted to a hostipal let alone ER in my entire life. I had had 3 operations but they were all outpatient deals.  So I'm lying in the ER and everyone keeps asking me dont you feel anything and I'm like no not really and they'd say well you just had an event and so it went. I was admitted for 3 nights and 3 days as they tried to chemically convert me.  I was discharged still in constant afib and on Metoprolol and Eliquis. Three weeks later I have my first TEE and conversion. Unfortunatly it only lasted 10 days. A week later my family doctor increased my Metoprolol to try and get my BP under 140 and this caused me to have bad asthma attacks and my inhalers won't work at all. My bad breathing and knowing I'm in constant Afib but really not knowing anything about AFIB other than my hearts not working right all lead me to panic attacks. Like Jean I love music but neither it or meditation could help me avoid the panic attacks. I called my family doctor but his nurse didn't think my meds could be causing the problems so I called my EP and his nurse said stop the Metoprolol we'll see you at your next appointment. I did and my breathing started improving with in twelve hours. At that EP visit I was started on Flecainide and they hoped I might self convert on it but I didn't I had a nuclear stress test and they actually had me set in a chair on the treadmill at the end because my rate was so high. 3 more days and then I had my second conversion - the first three attempts failed I was given additional medicine that caused me to have PVC's but I took it they instantly knocked me out and tried a 4th time and this time thankfully I converted to NSR and I have stayed in NSR for a year now. I have no idea how long it will last but I'll take whatever I can get. As Jean pointed out part of myafibexperience is our sharing our experiences and hopefully able to learn from each other's.. If nothing else I hope sharing about my experience at least helps to empower everyone of us to learn as much as we can about Afib its treatments and especially to become our own best advocate. I could dwell on the fact that my primary care doctor missed the connection between beta blockers and asthema medications but I think the better point here is to be involved in your own treatment and share the knowledge you gain in case it can help another. I look forward to helping in any way I can here and I want to personally say hi and welcome to myafibexperience to everyone of you.  May we all have NSR  Roy
  • Posted Tue 07 Feb 2017 10:58 PM CST