miaclockman
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miaclockman, April 14,  2020  7:56am EST

Continued AFIB after Ablation and Cardioversion!

Hi, all,

I have a couple of conditions:  about 20 years ago, I thought I was having a heart attack.  When I got to the ER, they discovered multiple blood clots in both lungs and an army of clots in my right leg.  At the time, I had just returned from a transatlantic flight, so they assumed that it was being in a cramped Boeing 747.  I was prescribed Warfarin for 6 months and then no further treatment.  About a year later, I ended up in the ER again with a massive clot in my right pulmonary artery.  This time, they performed a genetic test and I was positive for Factor II (Heterozygous Prothrombin Gene Mutation)... essentially, I am a clot factory.  I was placed on anticoagulants permanently.
Over the years, I had to have cardiac ablation for SVT twice.  However, last year, I began to have severe episodes of tachycardia coupled with VERY irregular heartbeats.  My heart would skip beats, have rapid beats in succession, etc.  I was placed on a 30 day Holter monitor which confirmed that I was having AFIB episodes.  They were frequent and severe enough that it was recommended that I undergo cardiac ablation by my EP.
So, in August of 2019, I had the ablation procedure.  Normally, they only keep the patient overnight for observation.  Well, in the middle of the night, I was walking the hospital hallways and my heart rate ramped up again.  I informed the nurse who told me that telemetry already saw it and notified the doctor.  I was kept in the hospital for an additional two days while my doses of Amiodarone and Metoprolol were adjusted.
I was released on a Friday.  On the following Sunday I was watching TV when my heart rate soared to 186BPM and my BP skyrocketed to 160/115.  I had no choice but to call 9-1-1.  It took them over 2 hours in the ER giving me various IV medications to get everything under control.  I was admitted to the cardiac center again.  My EP told me that I would have to have cardioversion to try and get this under control.  That was performed on Tuesday and I was released the following day.
Since then, I developed a horrible chronic cough, which my nurse navigator told me could be a side-effect of the Amiodarone.  The cough was severe enough that I was rupturing blood vessels in my throat, so the Amiodarone was stopped.  It took a good 3 months for the cough to finally get under control.
The AFIB episodes have continued and I followed up with my EP in December after a 30-day Holter once again.  As an aside, since June of 2019, I was determined to lose weight to improve my health (I am also a NON-smoker and do not take alcohol or drugs).  I started a HFLC (high fat low carbohydrate) regimen.  By December I had lost a total of 64 pounds.  Since I was treated for Graves Disease (hyperthyroidism) in my 40s (I am now 62), he wanted me to have my T3, T4 and TSH levels checked to make sure the Synthroid dose was still OK.  Sure enough, it was too high because of all the weight I had lost.
My PCP lowered the dose of Synthroid and the EP said that I had to wait 6 weeks for everything to stabilize before any further decisions could be made to rule out the AFIB being triggered by the Synthroid dose.
Well, it's been over 6 weeks, COVID-19 is in full swing and I have still had AFIB episodes.  I was supposed to have a 48-hour Holter about a month ago, but given that I have permanent lung damage from the blood clots, I felt really uncomfortable going into any physician's office unless it was necessary.  I cancelled the appointment.  Consequently, the follow-up appointment with the EP was also cancelled.
Twice in the past 3 weeks, I have had episodes which were frightening.  Symptoms were: rapid heart rate, wildly irregular beats, sweating, feeling like passing out, dizzy, and barely able to walk 2 feet without having severe muscle fatigue and out of breath.  These episodes lasted for hours.  When the first one happened, I called the EP office and he added Sotolol 80mg BID to the Metoprolol ER 75mg that I was already taking.
The last episode was 2 days ago.  My heart rate stayed at 135-145BPM, my BP tanked to 90/68,  SpO2 was 98%, I had vertigo, muscle fatigue, was out of breath every time I got up to walk, had a horrible headache and felt like passing out when standing and walking.  I was terrified to call 9-1-1 as I didn't want to be near a hospital during this pandemic.
I immediately sent a fax (Sunday) to the doctor's office so he would see it Monday morning.  I also called the service, expecting that they would NOT contact the on-call physician, but was told during COVID-19 the rules had changed.  The operator took my information and told me to expect a call within 30 minutes.  THREE HOURS LATER, I called back and told them nobody had contacted me.  I asked them for the name of the on-call physician as I intended to tell my EP what happened.
This last episode lasted well over 12 hours and I was terrified the entire time.  I called the EP office Monday morning as soon as they opened.  Within 30 minutes, the nurse practitioner called me back.  She agreed that it was inexcusable that the on-call never called me back and she would take further action on that matter.  She also agreed with me that at this point, a 48-hour Holter would be useless because the episodes of AFIB were so erratic.  She told me that the doctor will be ordering a 30-day Holter (which will be mailed to me, fortunately) and he will be calling me on Thursday with a virtual office visit.
I know that he has told me before that even though these episodes are scary, I am protected from stroke because I am on Eliquis 5mg BID for the Factor II disorder.  Nevertheless, it is still terrifying when I'm going through it!  My wife is scared when it happens, and rightly so.  I just need the EP to either: A) Reassure me again that these episodes aren't life-threatening, B) When I SHOULD call 9-1-1 (i.e., HR above xBPM, or BP above or below a certain number) and/or C) If there's a rescue medication I can take to help put the heart rate and rhythm back in some sort of control instead of waiting for 12 or more hours for the episode to resolve.
Finally, I need to discuss with him other possible reasons for this being triggered.  In 2013, I had to have gastric surgery to repair a vascular malformation in my duodenum (it was bleeding so much that I had to be hospitalized three times for anemia so bad that I required blood transfusions).  There were complications after surgery and I had to have 3 operations in 3 weeks (spent 29 days in ICU).  The surgeries damaged the vagus nerve in my GI tract.  Since then, I've noticed that these AFIB episodes seem to be set off after I feel a "fluttering" sensation in my gut.  Also, I currently have bulging discs in my cervical and thoracic spine that are causing incredible pain (MRI was also cancelled by the hospital because of COVID-19, so I can't be treated for the pain until they know the extent of the damage).  I have read documents online that both conditions can trigger AFIB episodes.  Therefore, I would rather deal with the trigger cause rather than continue to damage the electrical system of my heart by dealing with the symptoms!  Quite the conundrum, eh?
So, that's my story for now.  I dread having to possibly have another ablation procedure as it took me weeks to recover from the physical stress of it, PLUS I don't want to be near a hospital at this point in time.  I'm at high risk for lung complications and my wife recently finished chemotherapy after a stage IIIB colon cancer diagnosis, so I would never take the risk of possibly bringing something home to her as well.

I don't know if anyone out there has had a similar experience with a positive outcome, but I hope if there is, that you will share it with me.  Thank you for reading this post.  I hope everyone stays well and stays home until the worst is over and we can get this COVID-19 under control.
PS, As an aside, I am currently at 77 pounds lost and nearing my goal weight.  I'm aiming for less than 15% body fat and a waist to height ratio of less than .5 (height in inches divided by waist measurement)

2 Replies
  • DkinAA
    DkinAA, April 15,  2020  6:20pm EST

    Wow - a perfect storm of issues! please keep us informed what you learn - I hope your EP can help you out! A couple of thoughts:

    A lot of people here report vagus nerve triggers - like from drinking something very cold - I've had a few myself.

    I've been on an anti-arrhythmic, propafenone 3 X 150 mg/day, which has quieted my afib a lot. Probably due to stress lately, I've had some "breakthrough" episodes - my EP's team advised me to double the next dose, sort of a "pill in the pocket" approach on top of the regular dose. Also if my resting HR gets above 100 during episode, instructions are to take a propranolol dose, which is a beta blocker. This approach gets my HR controlled and turns the afib off pretty soon, the only problem  is that I might have to wait some hours until the next regular dose time. Maybe something like this will work for you. 

    Finally,from what I read here,  it seems like you usually has to wait a while for an ablation anyway, so maybe you should get in line because in a few months the pandemic might be more under control. I know what you mean though  - this is all pretty scary.

  • Cantrell
    Cantrell, April 16,  2020  1:49pm EST

    Wow! You have been through a lot. My Vagus nerve was damaged after radiation therapy for breast cancer along with a diagnosis of radiation pneumonitis in my lungs and afib. A year ago I started having afib episodes (which had been quiet for a while) after eating, along with an upset stomach.  Stopped the afib with an extra flecainide. I eliminated one food after another trying to find out what was upsetting my stomach.  My stomach is mostly but not totally settled down now and I've had few afib episodes for six months.  I am eating low fiber foods, drinking warm tea, walking more and sitting up very straight while eating.  

    Wishing you the best and hopefully you can get this sorted out very soon.

     

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