AFIB Support

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  • 1.  Welcome to the AFIB support community

    Posted 02-25-2017 13:30
    Hi Everyone! Welcome to the AFIB support community. As you all can see it's a brand new forum and we will be working hard to create a great place for discussion topics around AFIB support. Jump in and ask a question if you have one!

    Andrea Baer
    Grapeville PA
    (724) 396-7820

  • 2.  RE: Welcome to the AFIB support community

    Posted 03-03-2017 10:42

    I started my AFib journey on March 16, 2009.  With a strong maternal history of heart disease, I have been taking my morning vital signs every day for decades.  That morning in March it was WAY off.  I thought it must be the remnant of a bad dream and went on with my day.  Only the day got harder and harder as I went along.  Shortness of breath with any exertion, bounding BP (180/130) and pulse (180+) all day.  No, I didn't go to the ER because both of my hospitals were on probation for failing their Joint Commission inspections.  

    It was over the next day, so I went on with my schedule.  Then it happened again 10 days later.  After 6 weeks and 5 more 'event days', I saw my GP.  She suggested the new cardiologist in town.  He did the usual testing (ECG, echocardiogram, nuclear treadmill and 24 hour Holter monitor).  Of course, my heart was quiet.  Despite my spreadsheets and asking for a longer heart monitor, he patted me on the arm and said, 'It is anxiety or menopause.  See your GP for meds.' and walked out.

    Over the next year, the events went from every 10 days to twice a week.  Needing a recovery day after each 'event' day meant I was now losing 4 days a week to 'anxiety or menopause.' I changed my diet, exercise, sleep, anything to lessen the serverity and/or frequency of these events. My GP left a standing order for an ECG on request/no appointment and we finally documented it.  Her PA who had extensive cardiovascular experience read the ECG and said two words on March 3, 2010  that would change my life , atrial fibrillation.  While I waited for a follow-up appointment with the cardiologist I dug into the internet and Google Scholar to research.

    When I saw the same cardiologist, he said 'oh, yeah, AFib.  You won't die.'  He ordered repeat tests. And wanted me to take warfarin and digoxin.  Having been a family caregiver and now having read up on AFib, I asked about alternative meds as digoxin was considered a third line med for rhythm control.  He said, 'I'm the doctor.' And I replied, 'It's my heart.'  Luckily, the repeat testing showed no heart changes.  With those results in hand, I started to interview EPs (electrophysiologists - cardiologist who has studied an add'l 2-3 yrs to specialize in arrhythmias).  Over the next 2 months, I tried and failed (meaning they didn't work or made my AFib worse) several med combinations.

    At that point, I was ready for something else.  Lifestyle changes didnt' work.  Meds didn't work.  That left a cardiac ablation.  That's  procedure where they burn (ablate) the upper chambers of your heart. The scar tissue stops the erratic electrical pulses.  The EP gave me a 60% chance of success. I took it.  It was my first time *ever* in the hospital as a patient.  I wasn't scared.  I was annoyed that all my decades of healthy lifestyle to avoid a heart issue had led to a surprise diagnosis of AFib.  I practically raced the staff to the EP Lab.  It was a rocky recovery due to infections.  I came out of it 6 months later with normal rhythm (NSR) and no meds.  That ablation lasted 5 years.  In 2015, I had a second ablation as AFib returned after a life-threatening experience.  This was a quicker recovery and I'm back in NSR with no meds.

    Today, I am a patient representative to the FDA for cardiovascular disease; a published co-author in a medical journal; live tweet medical conferences for patients, researchers and clinicians; run an AFib support forum on Facebook; the Patient PI (primary investigator) for multiple research grants; and the Chair of the Health eHeart Alliance where I met Marcia Baker from Mended Hearts.

    Debbe McCall, BS, MBA

  • 3.  RE: Welcome to the AFIB support community

    Posted 03-04-2017 10:58
    Debbie--there is a lot of your afib journey that sounds like mine!!  Had my first brief afib after a CABG in 1994, but in 2005 the afib started full-time--typically racing heart rates (130's and up) and light headedness. Worked with my cardiologist for a long time--had several cardioversions, had the meds (with their side effects), had my first RF ablation for atrial flutter--and finally the afib got pretty regular and controlled.

    But going into another CABG in 2010 it flared up again--this time had a surgical ablation and removal of the atrial appendage during the CABG. But spent twice as long as normal in the hospital because they still couldn't control the afib.  It finally kind of stabalized after significantly increasing the dosage of amioderone.  Of course, when it finally abated I was still on the heart rate control meds too, and the ensuing radical drop in heart rate took a couple of weeks to correct as meds were changed. And then the amioderon bit me big time--back in the hospital for pulmonary toxicity, one of the nasty side effects of amioderone.  That required a year of steroids, which made my blood sugars go crazy, requiring insulin shots for the first time. But the steroids stopped, as did the insulin shots, as surprisingly did the afib.

    Of course, I stayed on the blood thinners--and had my first side effect from them, internal bleeding, multiple colonoscopies to fix the bleeding spots, multiple transfusions, and the general symptoms of anemia like tired, out of breath at times, etc.

    And then in late 2013/early 2014 the afib came back full tilt--requiring a full RF ablation, and another cardioversion a month later. That appears to have done the trick for now.  My electrophysiologist says it keeps trying to go into afib, but because of what he did, it can't get started. So I have at most 5 to 10 seconds of afib on rare occassions. And now off the meds for afib except for the blood thinners (and yet one more bout of internal bleeding and anemia recently).

    Of course, since that last RF ablation, I've also had a valve replacement (a TAVR), and a pacemaker implanted (for sick sinus syndrome).

    I think in general afib is one of the most difficult heart problem to treat--and the most frustrating for patients. It's still poorly understood completely by the medical community, it's so often co-present with multiple other heart problems, people have so many different symptoms (or none at all), the meds have so many possible side effects and interactions, cardioversions and ablations often have to be done multiple times, etc. 

    I think one of the most important aspects of dealing with afib is having doctors you can trust. Have a cardiologist of 23 years who is outstanding and initially treated the afib, but as it got worse, he got me to an excellent EP when it got beyond his scope. (In my cardiologist's words, "I'm mostly a plumber--valves, pump, plumbing--and can do some basic electrical work--but sometimes you need an electrician!)

    And one related note--I was adopted and didn't know my family history of heart problems. About 8 years ago I was able to reconnect with my birth mother--and to no one's surprise--a serious history of heart problems from both birth parents.  My father had the most of the heart problems, but my birth mother has also been fighting afib for the past 30 years. 

    Larry Haffner

    Larry Haffner