Nancy Beth Guptill - Living With AFIB - #BePulseAware

I have Idiopathic Permanent Atrial Fibrillation, along with permanent heart damage with an enlarged left ventricle due to AFIB.  I lived with silent AFIB for years that impacted quality of life and had no idea what was going on with my health until fall 2014 when I landed in the hospital. It is a manageable and treatable heart disease and you CAN live a full and active life with a good health plan in place.  Here is part of my story.

Looking back, the first time I recall feeling 'fluttering and flip-flopping' in my chest along with dizziness and weak spells was in early junior high when playing sports, or when sitting comfortably on the couch and standing up quickly.  When I shared with people at that young age what was happening, it was dismissed and I was told not to worry about it.  These AFIB episodes were infrequent, I would estimate 10 times per year where the episodes would last anywhere from seconds to minutes.

This pattern continued throughout my life until the year 2012, when I noticed the episodes getting worse, where they became more intense, lasted longer and came with other symptoms.  I also began to experience other symptoms on a more regular basis, including all the classic symptoms like general fatigue, weakness, dizziness, faintness, confusion, shortness of breath, increased urination, and perspiration.  These symptoms became my new normal as I was living with severe silent AFIB. As a public speaker, I certainly noticed increased sweating, weakness, dizziness and shortness of breath as I am known to be very animated and move about the stage and the room.  Not knowing what was happening to me, I figured I was going through the 'change of life'. 

By 2014, I was really sick, finding myself having to take very frequent naps through the day unable to concentrate, feeling very confused, weakness, extreme fatigue, longer episodes of sweating, frequent bouts of severe indigestion, and shortness of breath. I could barely walk up the stairs without having to stop to catch my breath to stop the dizziness because I felt I was going to collapse and throw up all at the same time.  I was so sick, I had to step down from volunteer commitments, decrease my workload, and turn away work because I was unable to fulfill work obligations or meet deadlines.  I also started having time lapses and blank spots in my memory which actually became dangerous while driving and embarrassing in business meetings.  Through all of this I was suffering, for the most part, from Silent AFIB; I did not know I was in permanent AFIB as I could not feel the fluttering on a constant basis, only on an infrequent basis and since I lived with it my entire life, I did not think it was abnormal.

Then, November 2014 came and that is when everything came to the forefront. I was rushed to the hospital with my first very serious bout of intense AFIB where it felt like a heart attack.  Rate and Rhythm were out of control, I collapsed with dizziness, severe confusion, and extreme pain in my chest.

They were able to convert my heart back to normal sinus rhythm using the drip method.  In the month of November 2014, I ended up being in the outpatients a total of 11 times, when it was decided to leave my heart in permanent AFIB and I started on medications right away to manage the rhythm and rate.  It took until March of 2016 to finally find a treatment plan that managed the AFIB so I would have a better quality of life. 

In Summer 2015 I had an echocardiogram which showed permeant heart damage with left atrial enlargement as a direct result of the Atrial Fibrillation. In fall 2015, stress tests revealed I have a severe case of AFIB, as even mild walking caused instant rate and rhythm issues, with my heart jumping to over 190 RPM and severe intensity with the result of me almost passing out and fainting within 15 seconds of level 2 of the stress test.

Prior to March 2016 I had a very poor quality of life to the point where in February 2016 I actually thought I would have to go on disability and stop working all together.  However, in late-February 2016, I had another intense AFIB episode which felt like another heart attack. 

Whatever transpired in that particular severe AFIB episode, once it was over, after a few days of recovering from that incident, I began to feel much better.  I noticed I could put in a 5-hour work day without having to rest and I noticed clarity and sharpness in my thinking was coming back. After approximately two weeks from the time of the last severe AFIB episode, I noticed I could put in a full 8-hour work day and my concentration and clarity was fully back.  Further, while I still suffer symptoms, my overall quality of life improved and I am back to working full time.  I have had to learn working within my 'new normal' but it is very manageable.   

This summer (2016) I recall walking along the beach and feeling complete joy as I was not able to do the same in 2014 or 2015.  I realized just how much my health improved, that I was able to stroll, walk and jog along the shoreline like I used to do to stay fit and healthy, albeit I have limits and have learned to live within those limits. I am not able to exercise at intense levels because it will trigger extreme AFIB episodes, but at least I can actually get up and exercise and work/live within my new limits.

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September is AFIB Awareness Month.  I am sharing my story because I think it is very important to share with others the symptoms I experienced and to not take them lightly, to bring awareness to silent AFIB as I often wonder if I had gone for a doctor visit would the outcome be different.  Specialists tell me that the outcome would have been the same given the genetic component and nature of my AFIB.  Still, I would like to bring awareness and share my story because I did not have to suffer for so long, had I known what was taking place I could have worked with my doctors much earlier on a treatment plan.

For more information and to learn the symptoms of AFIB please visit the Heart & Stroke Foundation website and Be Pulse Aware.