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A-Fib Patient Story #77

My A-Fib Story

by Dr. Sam T.

MD Develops A-Fib After Subdural Brain Hemorrhage & Heart Block; Chooses LAA Closure, Then Two Ablations by Dr. Vivek Reddy

By Dr. Sam T. MD, Tennessee, USA, December 2014

We’re very grateful to Dr. Sam for his story. He is the model of the proactive patient.
Dr. Sam suffered a hemorrhagic stroke requiring brain surgery after being on baby aspirin for 10 years. How many of us have been taking baby aspirin for that long or longer? Even at that small a dose, there could be a long-term risk of hemorrhage and GI problems. Is baby aspirin (or the other anticoagulants) worth the long-term risk? There are other ways to thin the blood. Personally I’ve stopped taking baby aspirin.

Every A-Fib Story is Unique

I would like to tell my Atrial Fibrillation (A-Fib) story in order to show how unique each individual’s A-Fib situation can be, and why it’s so important to be active in making good decisions about your own treatment. Doing your own research and educating yourself about AFib is very important and will assist you and your physician when making tough decisions about your A-Fib treatment choices.

It’s so important to be active in making good decisions about your own treatment.

I am a 74-year-old retired physician (not a cardiologist) and have had A-Fib since age 72.  My case is unique and complicated. it has required some tough decisions and a lot of research on my part.

The first Cardiologists I saw were not very helpful. Fortunately, I was able to locate a very good Electrophysiologist (EP) who provided the treatment I needed to get me back into Normal Sinus Rhythm (NSR) and off anticoagulants. I don’t consider myself “cured”, but I have only had a few short episodes of A-Fib in the last 18 months. Any suggestions I offer you should be taken as educational and not as medical advice. Any decisions you make should be made in consultation with your doctor.

The Progression of My Complicated Story

The following is a brief description of my unique situation:

1997: Brain Hemorrhage from Aspirin Requiring Surgery

I developed a large Spontaneous Subdural Brain Hemorrhage which required brain surgery.  It was caused by the daily Baby Aspirin I had been taking for 10 years to prevent a heart attack. I was told to never take anticoagulants or Aspirin again, because I was at high risk for another bleeding episode.

July 2012: Pacemaker, Paroxysmal A-Fib, Three Mini-Strokes

After seven years of progressive second degree heart block and a resting heart rate of 30 beats per minute, I had a Cardiac Pacemaker implanted. On the day my Pacemaker was implanted, I was found to have A-Fib which was felt to be Paroxysmal. My cardiologist, at that time, said only to take Coumadin (an anticoagulant) and see him again in 6 months.

I was confused…my cardiologist said to take Coumadin (an anticoagulant) and see him again in 6 months…my Neurosurgeon told me not to take aspirin or anticoagulants…

I was confused as to what to do as I remembered that my Neurosurgeon had told me not to take aspirin or anticoagulants, because I was at high risk for another intracranial bleed. I decided not to take the Coumadin until I got another opinion from a Neurologist; but I couldn’t get an appointment for a month, so I waited.

One day my right arm suddenly went limp and numb for about 20 seconds. I knew I had just had a brief Transient Ischemic Attack (TIA or Mini-Stroke), so I went to the Emergency Room for evaluation. I was hospitalized for observation and placed on Coumadin.

Over the next 2 months, I had two more TIA’s due to poor anticoagulant control on Coumadin. These small strokes were very frightening as I struggled to figure out what to do. (Later my Pacemaker readings showed that during these two months I had had two episodes of A-Fib lasting five days each with a two-week period of Normal Sinus Rhythm (NSR) between them. These two long episodes of A-Fib probably allowed blood clots to form in my Left Atrium which broke off and went to my brain causing the TIAs. Having a pacemaker allowed my Electrophysiologist to read a minute-to-minute recording of my cardiac rhythm during the period of my TIAs.)

Switching to Xarelto but at High Risk for Stroke/Intracranial Bleeding

I decided to switch to Xarelto (one of the new anticoagulants), but my cardiologist had no experience with it and would not recommend it. My Primary Care Physician had no experience with it also, but he agreed to try it.

I stabilized on Xarelto, but I realized that I was at high risk for Stroke and high risk for intracranial bleeding if I remained on Xarelto indefinitely. My CHA2DS2-VASc Score was 3, and my HASBLED Score was 3.  I had to do something to reduce my risks and soon.

Decision to Close Off the Left Atrial Appendage

I began to study A-Fib online. I read everything I could on Google.com about A-Fib, I joined all the A-Fib [discussion] websites I could find, I read Steve Ryan’s book [Beat Your A-Fib] and talked to him on the phone, and I got a second opinion from a local Cardiologist.

This was a very stressful time for me. I learned that I needed to reduce my risk of stroke by getting into NSR. And in order to get off of anticoagulants thereby reducing my risk of bleeding, I needed to have my Left Atrial Appendage (LAA) closed.

The LAA is where about 90% of the blood clots form in the left atrium during A-Fib; they can dislodge and go to the brain causing strokes. A Catheter Ablation procedure does not include closing off the LAA, so you sometimes have to continue taking anticoagulants or anti-platelet medicines afterwards, especially if you are at high risk of stroke like I was.

Choices in Closing Off the LAA, Selects LARIAT and Dr Vivek Y. Reddy

The procedures which close the LAA were limited to a Cox-Maze Surgical Procedure, a Mini-Maze Surgical Procedure, a Surgical LAA Closure (AtriClip), a Watchman Device Placement, or a Percutaneous LAA Closure (LARIAT) Procedure.

As I studied these procedures, I researched who in the US were the best at each. I wrote and talked with 3 cardiovascular surgeons—each felt they could treat me.

I decided to contact Dr Vivek Y. Reddy, an Electrophysiologist (EP) at Mount Sinai Medical Center in NYC, because he was active in placing Watchman Devices and had experience with the Percutaneous LAA Closure (LARIAT) Procedure.

Dr Reddy agreed that I was at high risk both for stroke and for bleeding. The Watchman Device Study was not an option for me because I would not be able to follow the protocol since I could not take Aspirin.

He recommended that I first have the Percutaneous LAA Closure (LARIAT) Procedure which would close my LAA , then in 3 months have an Catheter Ablation procedure to get me into NSR. I narrowed my choices down to two, either travel to NYC for the LARIAT Procedure plus Catheter Ablation or have a Hybrid Surgery/Ablation at Vanderbilt in Nashville. It was a tough decision. I decided to take the multiple trips to NYC for the cardiac procedures by Dr. Vivek Reddy and to not have surgery.

He recommended the Percutaneous LAA Closure (LARIAT) Procedure, then in 3 months have an Catheter Ablation procedure.

Dec 2012: Closes Off LAA, Develops Pericarditis & Persistent A-Fib

During my appointment with Dr. Reddy in NYC, my Pacemaker reading indicated that I had had only one episode of A-Fib since the time of my TIAs in Aug/Sept; so it was felt that a LAA Closure LARIAT Procedure should be done first. I had the Percutaneous LAA Closure (LARIAT) Procedure done in NYC by Dr Reddy. Things went well except that I developed Acute Pericarditis. I was treated for the Pericarditis with one week of Prednisone (steroids), and then two weeks of Colchicine; the Pericarditis cleared up. At my follow-up appointment a few days after the procedure, I was also found to be in A-Fib.

(The Percutaneous LAA Closure LARIAT Procedure consists of two magnet-tipped catheters—one inserted in the Right Femoral Vein and threaded up into the Left Atrium of the heart and positioned inside the LAA. The second catheter is inserted through the skin just below the sternum and into the Pericardial Sac just outside the heart; it is positioned outside the LAA, and the two magnets connect the two catheters. Then a lasso Suture goes over the outside catheter, and that Suture noose is tightened closing off the LAA as the inside catheter is removed from the LAA. The outside catheter is then withdrawn, and a drain is left in the Pericardial Sac for about 12 hours, then removed.)

March 2013: ElectroCardioversion for Persistent A-Fib & Put on Multaq

On my return trip to see Dr. Reddy, my Pacemaker reading showed that I had been in Persistent A-Fib since the day of my LARIAT procedure. It was felt that the Pericarditis may have caused the change in rhythm.

It was recommended that I have an immediate Electrocardioversion to put me in NSR, then start an antiarrhythmic medicine Multaq, and return the next month for a Catheter Ablation.

April 2013: Catheter Ablation, A-Fib Free but then Left Atrial Flutter; Multaq Affects Liver

I had a Catheter Ablation Procedure (CA#1) to get me out of Persistent A-Fib and into NSR—done by Dr Reddy in NYC. I was in NSR for one month after CA#1, but then I developed Persistent Left Atrial Flutter (A-Flutter). It was decided that I needed another Catheter Ablation soon..

Tests found I had abnormal Liver function caused by the Multaq which I had been taking for six weeks. I stopped the Multaq, and my Liver tests went back to normal.

I was disappointed but not really depressed, because I had read that frequently people have to have a second Catheter Ablation. And I thought that I had the more common Right (Typical) A-Flutter which is fairly easy to control. It turned out that I had Left (Atypical) A-Flutter which is one of the most difficult arrhythmias to treat.

I also was found to have abnormal Liver Function Tests caused by the Multaq which I had been taking for six weeks. I stopped the Multaq, and my Liver tests went back to normal

July 2013: Second Catheter Ablation—Success! Off Anticoagulants, Reduced Stroke Risk

I had another Catheter Ablation Procedure (CA#2) done by Dr Reddy in NYC which got me out of Persistent Left (Atypical) A-Flutter and put me into NSR.

For the next 18 months I was able to go off all anticoagulants which reduced my bleeding risk, and I remained in Normal Sinus Rhythm which reduced my stroke risk.

I have had about four short episodes of A-Flutter lasting less than 10 minutes over those 18 months. Now I am only on a low dose Beta Blocker (Metoprolol) to control PVC’s related to my Second Degree Heart Block.

I do not consider myself “cured” of A-Fib but rather controlled.

Started Magnesium Supplement & High-Potassium Foods

After having a pacemaker implantation and three cardiac procedures within the last 2 years, I have noticed a definite reduction in my exercise capacity. I have reduced my Alcohol intake and started Magnesium supplements and high Potassium foods as preventive measures.

LESSONS LEARNED

From my own experience and reading, I have a few suggestions for others with A-Fib:

1. Do Not Remain in A-Fib indefinitely if possible. Paroxysmal A-Fib may lead to Persistent A-Fib which over time can lead to Long-Term Persistent (Chronic) A-Fib which becomes more difficult to treat and may lead to Heart Failure.

At this time when all medicines and cardiac procedures have their risks and limitations, finding a way to get to NSR and staying in NSR is most important. I have two friends with A-Fib who have been successfully controlled in NSR for 7 years on rhythm-control medications and anticoagulants; they are hoping the success rates for Catheter Ablation procedures improve in the future before doing anything else.

I had to go directly to cardiac procedures to reduce my risks. Cardiac surgery may be the best choice for some. There are different options for different people. There is still much to be learned about A-Fib. So keep up to date as best as possible, because causes and treatment options may change. Learn about Coumadin and the New Oral Anticoagulants (NOACs).

There are different options for different people. There is still much to be learned…keep up to date as best as possible.

2. Find a good Cardiologist or EP or Surgeon even if you have to travel. Do your homework and have your doctor contact them if needed or try yourself. They are very difficult to reach, and you may have to first communicate with the Nurse Practitioner.

But be determined. Read the A-Fib Websites, use Google.com for info, read Steve Ryan’s book, and consult with your own Doctor. Determine what is best for you.

There are still some cardiologists who don’t keep up with the latest treatments for A-Fib. If you have AFib and someone says there’s nothing to do except take Coumadin, educate yourself, and find a knowledgeable cardiologist or EP.

2. Become an A-Fib Expert—especially about your unique situation.  A-Fib has many ways of presenting itself, many different symptoms, and many triggers.

Become an expert on your own unique case. 

Become an expert on your own unique case.
 My brother, who is not a doctor, developed very symptomatic A-Fib.  He became an expert about his own unique case, found a good EP, traveled out of town for a Catheter Ablation, and has been in NSR for over a year. He now checks his own heart rhythm with a Handheld ECG Monitor Device which he has learned to use. So you don’t have to be a doctor to learn about A-Fib.

4. Buy a Handheld ECG Monitor Device and learn how to identify: P wave, R wave, T wave, A-Fib Rhythm, NSR, heart rate, PVCs, & PACs. Then you can tell if or when you are in A-Fib or NSR and which irregular beats are worrisome or not. Search Google.com for help to learn these; it’s not hard.

Dr. James Grier of North Dakota State Univ. is publisher of  Comparison of Handheld, 1-lead/channel ECG / EKG recorders’, a website to help you compare and select a good Handheld ECG Monitor Device. Cost is about $200-$500. Contact him if needed.  [Also see our article about Consumer DIY Heart Rate Monitors]

My brother and I both use InstantCheck by Daily Care Biomedics, Inc, which costs about $500, but I have no idea which one is the best for the cost. Dr Grier was very helpful. Dr Grier and I also determined that it can be used with a Pacemaker- even though the instructions say not to use with a Pacemaker.

5. Be Careful of Local Anesthesia with Epinephrine: This past year I had to have a dental implant and bridgework requiring that I have Local Anesthesia several times. The Dentists use local anesthesia with Epinephrine (Epi or Adrenalin) to numb your mouth; adrenalin (Epi) is one of the drugs EPs can use to try and trigger A-Fib when they have completed their atrial ablations, so dental local anesthesia with Epinephrine (Epi) potentially can trigger A-Fib.

Dentists use local anesthesia with Epinephrine…within 30 minutes I was in A-Fib.

There was very little info online about it and no studies had been done about dental anesthesia with Epi & A-Fib, and my EP said he thought it would be OK to use. So I had it, and within 30 minutes I was in A-Fib which lasted about 20 minutes and then I went back into NSR.

From then on I requested my dentist use only local anesthesia without Epi, and I had no more A-Fib episodes. Dentists like to use local anesthesia with Epi because it lasts longer and reduces bleeding locally. Discuss with your dentist if you think you’re sensitive. Tell him/her you have A-Fib.

In the ER Doctors use local anesthesia with Epi to sew up lacerations and/or to do small surgical procedures requiring local anesthesia, because it reduces bleeding locally and lasts longer. Discuss with the doctor. Tell him/her you have A-Fib.

Nasal Decongestants have the potential for triggering AFib, too.

Bottom line: Be Active in Your Own A-Fib Care!

– Dr. Sam T., MD
Tennessee, USA

Editor’s Comments:
Anticoagulants not for everyone: One of the most difficult decisions you and your doctor have to make is whether or not to go on anticoagulants, and this decision may change as you do.
Anticoagulants are not like taking vitamins. As in Dr. Sam’s case, anticoagulants have their own set of risks and side effects. (Aspirin is also known to cause GI irritation.) Dr. Sam found himself between a rock and a hard place. He couldn’t take anticoagulants because of hemorrhaging from taking just a baby aspirin. But if he didn’t take anticoagulants, he had TIAs (small strokes). The Lariat (and no longer being in A-Fib) reduced his risk of stroke so that he didn’t have to take anticoagulants.
Most people who have a successful catheter ablation don’t have to stay on anticoagulants. Their risk of stroke is reduced to that of a normal person. (Obviously they can’t suffer an A-Fib stroke if they no longer have A-Fib.)
Studies have found that “the stroke risk over time of A-Fib patients treated with ablation was similar to patients with no history of A-Fib.”
Seven Years on Antiarrhythmic Meds & Anticoagulants: Dr. Sam mentioned his two friends who have been on rhythm-control meds and anticoagulants for seven years while waiting for ablation techniques to improve. Such long-term drug use isn’t recommended. Most antiarrhythmic meds are known to cause bad side effects.
In a study comparing antiarrhythmic drug therapy (AAD) to catheter ablation, adverse events [complications] of long-term ADD therapy were 30% compared to the much lower, and generally temporary, 5% of catheter ablation complications. And these antiarrhythmic complications can wreck your life (such as bleeding problems).
One of the main reasons people have a catheter ablation is so that they don’t have to take antiarrhythmics and anticoagulants any more. (See Catheter Ablation Complications)
It’s safer today to have an ablation than to not have one. Plus few things improve quality of life more than having a heart that beats normally again.
References for this article
Curtis, A.B., Narasimha, D., ‘Arrhythmias in Women’ Clinical Cardiology, 2012 Mar; 36(3) URL: www.ncbi.nlm.nih.gov/pubmed/22389121

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If you find any errors on this page, email us. Y Last updated: Sunday, July 17, 2016

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