A-Fib Patient Story #80

Tony Hall - PE Story photo 150 px sq at 300 res

Tony Hall, Evansville, IN

Very Active 54-Year Old Became His Own Patient Advocate; Chose Ablation as First Line Treatment

By Tony Hall, Evansville, IN, May 2015

If you are reading this story, then it is likely you have A-Fib or have a loved one or friend that does. Know that you are not alone thanks to resources like this, and thanks to the pioneers of our journey, and for the ongoing, dedicated and passionate work being done by Steve and Patti Ryan.

54 and Very Active

I am now a 55-year-old male and was 54 when I received my diagnosis. Up until the time I was diagnosed, I was very physically active. Primarily a runner, I also enjoy backpacking, moderate weight lifting, and a mix of other things that come my way.

I have run a few marathons and many shorter races. On August 7^th, 2012, I set a goal to run the Leadville 100 Ultra Marathon trail run in Leadville, Colorado. The race was in August of 2013. I finished the race in over 29 hours, which was within the required 30 hour cut-off to qualify as a finisher of this grueling mountain trail run.

I was in the best shape of my life and had just conquered a feat that still seems daunting today.

January 2014: My A-Fib Appears

I now suspect I was in A-Fib when the pounding started and then converted back to normal sinus rhythm.

My first awareness that I may have some sort of heart related issue occurred while I was running at the local YMCA in January of 2014. I was running on the track at a fairly quick pace when I felt a pounding heart rate. I stopped running and started walking until the heart rate calmed down. Looking back, I now suspect I was in A-Fib when the pounding started and then converted back to normal sinus rhythm.

But at the time, I attributed this rapid heart rate to simply being somewhat out of shape. I had not a clue what A-Fib was or any knowledge of heart rhythm disorders.

These occurrences continued sporadically. And while I did find it a bit concerning, I simply did not want to take my mind to the place of it being a potential heart issue. I had never used a heart monitor and still did not think to purchase one as I always considered the use of a heart rate monitor for those that were very methodical and precise about their running, which I was not.

I downplayed the significance and explained it away as simply being a bit out of shape.

After a few of these episodes, I nonchalantly informed my wife, Jill, of the issue. I downplayed the significance and explained it away just as simply being a bit out of shape.

Then in June of 2014, my father-in-law had triple by-pass heart surgery (which by the way, was a great success). During his time in the hospital, my wife insisted that I get a physical in the event I had any issue with my heart relative to the exercise induced rapid heartbeat I had been experiencing. So I did.

June 2014: After My Father’s Triple By-Pass, I Finally Get a Physical Exam

On June 19^th, at 8am, I reported to a local heart care facility to have a nuclear stress test that was ordered by my GP. I was a little nervous as I tend to be in such hospital or doctor’s office settings. However, I was eager to receive a good report, and fully expected to get right back to my busy work schedule.

The mood changed in the room….I could see in their faces this was not a mere hiccup in the testing, but something far different.

All went well for the preliminary testing up until I was approaching maximum heart rate on the treadmill. That is when my A-Fib kicked in full speed, and they backed the treadmill down and had me sit in a chair. During the later stages of this testing, the technician was verbalizing what she was seeing on the monitor, and she mentioned I was in A-Fib. The mood changed in the room.

I went from joking with the techs to disbelief and immense concern on my part. I could see in their faces this was not a mere hiccup in the testing, but something far different. I sat there for probably 40 minutes waiting for my A-Fib to convert back to normal sinus rhythm, but it would not. They indicated that I might have to be admitted, and I pleaded in earnest for that not to happen.

Sitting Alone in the Echocardiogram Room: What the HELL!

Things were kind of a blur at that point, and it was very emotional to grapple with as I sat alone in the Echocardiogram testing room. “Why was I here in this room, what about my afternoon proposal, what the HELL!!!”

After talking to the technician and answering questions about any previous symptoms, I disclosed a couple of dizzy spells that had occurred while driving. The EP consulted by phone with the tech. He agreed to release me with prescriptions for Xarelto and Metoprolol, and a non-driving restriction. While getting the discharge instructions, the tech mentioned something to my wife and I about a procedure called an ablation.

I kind of dismissed it as I was somewhat numb with all that had just occurred, but my wife remembered that piece of the conversation. My follow-up appointment with the EP was set for July 3^rd.

In a Bit of Shock As We Drive Away

I sit in the passenger seat feeling like a pet heading to a kennel. Suddenly things are different. I no longer have that “healthy as a horse” attitude.

So we leave the hospital, and I ask my wife for the keys to the car. She reminds me that I have been told not to drive, even though I drove to the appointment and felt fine to drive. I am still in a bit of shock as we drive away and I sit in the passenger seat feeling like a pet heading to a kennel.

Suddenly things are different. I no longer have that “healthy as a horse” attitude. This visit was in the way of my busy work schedule, and I needed to get back to the office to prepare for my meeting! Instead, the afternoon appointment now seemed insignificant.

Instead I was on my way to the pharmacy, being chauffeured by my wife, to pick up meds for my heart disorder. I took the afternoon off to digest where this was all going.

My wife drove me to and from work for a few days until I could no longer bear my self-imposed embarrassment of getting dropped off and picked up from work. I had not had any sort of dizzy spells for many weeks, and the drive to work was short. So, I decided to disobey the doctor’s order. This is not recommended by the way.

The Internet Is a Good Thing and a Bad Thing

My wife happened upon the “Beat Your A-Fib” book site. That book became my new best friend.

Anyway, I took the meds for a few days and read as much as I can on the internet about this condition I have now called Atrial Fibrillation. “Who gets this and why?” “What are your treatment options?” “What are the potential side effects of the meds I am taking?” As you may know, the internet is a good thing and a bad thing. Plenty of information. But what is true and what is simply opinion, or false???

My wife spent at least as much time as I doing her own research. We are soon better informed but in many scattered directions. This thing called an ablation seemed to be the only chance to avoid the drug therapy that does not look like a good option to me, as I was not taking well to the Metoprolol. I was hoping to find an option that did not include drug therapy.

My wife happened upon the “Beat Your A-Fib” site and quickly ordered Steve Ryan’s book for me. That book became my new best friend as my wife firmly pushed me towards taking personal ownership of this condition.

My Wife Knew I Needed To Became My Own Advocate

While she was very concerned and extremely supportive, she knew that until I became my own advocate, that I would not pursue the most effective path to addressing and dealing with this condition. She was right there.

I started doing more research through the help of Steve’s book, and found comfort in the education about the variety of heart rhythm conditions, treatment options, testimonials, personal stories, etc. It was great, and I decided to enlist Steve as my A-Fib Coach.

Steve as my ‘A-Fib Coach’

That was another excellent move. We had a few phone consults, and Steve helped me clarify points in his book about A-Fib, treatment options, and also helped me identify options for medical facilities and experienced EPs. Steve offers great advice and is quick to realize that any decision you make is a personal decision, and that it must be right for you based on your health condition, heart rhythm issue, age, tolerance for medications, etc.

Finding a cure is the best possible outcome, but many patients will rely on medications as their choice of treatment, for a variety of reasons. No matter what your situation is, you will find Steve’s knowledge very helpful if you desire to learn more about your condition, and are looking for information on how others have dealt with their condition, and what kind out outcomes they have experienced.

Steve asked, “So, Jill, how are you doing?” That was a light bulb moment for me.

How A-Fib Affects Your Loved Ones

One thing that struck me with Steve was a question he asked of my wife who always joined me on the conference coaching sessions. He asked, “So, Jill, how are you doing?” That was a light bulb moment for me. Steve was very interested in knowing how Jill was doing in dealing with me having A-Fib.

I consider myself to be a very supportive husband in many ways; but until Steve asked that question of Jill, it really did not occur to me how dealing with A-Fib affects the lives of those close to us.

July 2014: First Visit with the EP

I reported back to the heart clinic on 7-3-2014 to meet my EP for the first time. Oddly enough, I was not able at that early stage to identify when I was in A-Fib. Actually, I thought I was not in A-Fib when I showed up for that visit, but not sure. I met my doctor, and he asked many questions while reviewing my file. I had discontinued taking the Xarelto and Metoprolol as I was concerned about side effects and wanted to discuss them with him.

He was not thrilled about that but understood, since I had concerns about the meds and had not seen him until that visit. His nurse did an EKG before he entered the room, so he knew I was in A-Fib during that visit. He thought for certain that I would have converted after leaving the stress test on June 19 and was surprised to see that I was still in A-Fib on July 3rd.

Cardiologist Insisted on Cardioversion Before Considering Ablation

By this time, I was aware of what an ablation was but still had much to learn. We talked about having an ablation as I knew that he performed them, but it was too early to get any sort of buy-in from him. He first wanted to do a cardioversion, but only after I resumed the blood thinner for the suggested period of time to minimize any chance for blood clots.

I did realize that it is very likely my A-Fib would return [even with a successful cardioversion].

So on to 7-22-14, I was very excited to have my TEE and Cardioversion. I did realize that it is very likely my A-Fib would return if the cardioversion was successful. Well, I converted on the first attempt into normal sinus rhythm. It was at that time that I first recognized the difference in the normal heartbeat sensation and that of being in A-Fib. Important to note is that my A-Fib heart rate would hold fairly steady at about 80-85 beats per minute. While exercising, it would shoot to over 200 pretty quick. So, I suppose it was hard for me to notice my A-Fib in the early going, since my heart was not going crazy and would have a consistent pattern.

In and Out of Sinus Rhythm

After that, I stayed in sinus rhythm until July 28. Then back into A-Fib. I converted back to normal rhythm on July 31, and back into A-Fib August 7. I was then in and out until August 21. It was on August 21 that I kicked back into A-Fib and did not convert again. I now knew enough to know that my A-Fib was persistent.

Now what to do??? I consulted with my local EP once I knew my pattern of converting was gone. By now I had researched a good deal, had read a great deal of Steve’s book, and felt as though I was a candidate for an ablation due to my age, good physical condition, desire to remain extremely active, and intolerance for the Metoprolol.

September 2014: My EP Wanted to Try Drug Therapy First. Instead, I Tried the Mayo Clinic

Many doctors do not view an ablation as a front line treatment for A-Fib. [Today’s guidelines say you can move right to an ablation and bypass drug therapy.]

I approached my doctor about this procedure, and he advised that he would only consider it if drug therapy was not successful.

Many doctors do not view an ablation as a front line treatment for A-Fib. [Today’s guidelines say you can move right to an ablation and bypass drug therapy.]

I also knew by this time that I ought to be looking for alternate providers outside my city who may have more experience with heart rhythm issues. After researching a few facilities, I elected to contact the Mayo clinic in Rochester, MN.

Dr. Douglas Packer

I was able to get an appointment with Dr. Douglas Packer at Mayo on 9-22-14. What a great man he is. After our consult, he had me immediately resume my Xarelto prescription due to the fact that I was still in A-Fib, and there is a chance of a potential stroke when one converts from A-Fib to normal sinus rhythm.

I Learned to Not Rely On CHADS2 Scores Without Medical Consultation

You see, I had decided to quit taking the Xarelto after my cardioversion due to what I had read about CHADS2 scores and knowing I had a good score. Folks, do not rely on CHADS2 scores without medical consultation from a physician who clearly understands A-Fib. One needs to keep internet information in perspective.

Official Diagnosis: Persistent A-Fib. Decision to have an Ablation

The consult resulted in Dr. Packer giving me the official diagnosis of being in persistent A-Fib. That certainly provided an additional challenge for a successful ablation. He walked me through all treatments options and explained everything in great detail. He drew a picture of the heart and showed me how the electrical signals in persistent A-Fib differ from paroxysmal A-Fib, and why catheter ablation can be more challenging with persistent A-Fib. I was still hopeful about the prospect of having a successful outcome and avoiding drug therapy if it were a successful ablation. The decision was mine.

After reading his report a couple of weeks later, I was anxious to see if I could get an ablation scheduled with him before the end of the year. I talked to his scheduling nurse who is also a very wonderful person, and we put a date on the calendar. I was to report to Mayo Clinic for testing on December 10th and have my ablation with Dr. Packer the next morning on December 11^th.

December 2014: Preliminary Testing at the Mayo Clinic

I reported as scheduled to the Mayo Clinic on December 10^th at 8 am and completed all of my preliminary testing. By the way, Mayo Clinic in Rochester, MN is a great campus with a very friendly and helpful staff. It is large as you would expect, but they really work hard to make you feel comfortable and at ease.

This happened to be my wife, Jill’s, birthday, so I scheduled her a massage at a nearby spa. After all the testing was over, we walked over together. Then I returned to the room to relax for a bit.

It was then that I received a call from the scheduling nurse indicating that Doctor Packer was very ill and would not be able to do the procedure. My heart sank. She was very apologetic, as was Dr. Packer through her communication.

Dr. Packer Ill: Reschedule or Go With Another EP?

I was over five hundred miles from home, had been through a full day of testing, and another day of travel was waiting on the backend of this visit. The nurse went on to mention that another EP was available to do the procedure but that he had a procedure before mine, and I would be his second case of the day. This was not comforting as I had researched Doctor Packer extensively, had consulted with him, and had a level of comfort that was very good.

The nurse was very quick to say that I could reschedule and that they would completely understand my decision to do so. The problem was that I was still in A-Fib, and had blocked this time out from work and around a busy holiday schedule. Not to mention the insurance implications of going to another calendar year and starting over with deductibles, co-insurance and other out-of-pocket expenses. I told her I would consider and quickly did my research on the other EP to see if I could come to a point of acceptance. I did, and decided to have the procedure done with the other and very capable EP.

Ablation Day Arrives

I showed up the next morning at the St. Mary’s Campus of Mayo and reported to admission. I was processed and was in my room when a nurse comes in and asks if I am ready to go. I knew my wait was going to be pretty lengthy as I was going to be the second case for my replacement doctor.

I asked if the first case had been canceled as it was still early in the morning, and I expected to wait at least a couple more hours. I was then told that another doctor was available, but that I would need to decide fairly quickly if I would like him to do the procedure. The other Doctor was available because his case had been cancelled for whatever reason.

Choosing a Third EP

Can this possibly be……I am now exhausted with analysis and unsure what to do. But this would be this EP’s first case of the day, and I was told he is VERY good. I asked if I could talk to the nurse who had scheduled my case originally and who had proposed the second EP the day before.

She insisted on coming to my room, and we had a very good and lengthy conversation about this third doctor. His credentials were impeccable, and he was given many of their tougher cases. After her explanation and empathy for the difficult position I was placed in, she again said the decision was completely up to me. They were fine with whatever decision I made. I could still have doctor number two do the surgery.

Dr Saraj Kapa Asked―Was I Totally Comfortable With My Decision

Dr Suraj Kapa

I decided on doctor number three and was quickly wheeled to surgery prep. Again, the nurses and technicians were very friendly, helpful and compassionate. As I was getting prepped for surgery, in walked Doctor Saraj Kapa. He pulled back the curtain and addressed me. He is a very young man relative to my age and he wanted to introduce himself. He wanted to make absolutely certain I was comfortable with him doing the procedure, based on the change of plans I had experienced. He wanted to make sure I did not feel pressured. I was totally comfortable with my decision and told him just that.

I was moved over to surgery and greeted by a talented team that were very friendly. We chatted a bit as they were preparing me for the procedure, and then it was time for anesthesia. The next thing I remember is that I am being wheeled through the hallway on the transport bed and I see a clock indicating about 1:30 pm. Wow, it is over !!!! I felt fine at that moment and relieved.

Wow, It’s Over―I Was Elated and Very Joyful

My wife was in my room, and I was told that my ablation was successful. YAY! I was elated and very joyful at this positive outcome. All further testing indicated normal sinus rhythm, and I was released the following day once the catheter areas were cleared for initial healing. I met with doctor Kapa the next day after my Echocardiogram, and he explained how things went. I was free to go!!!

We stayed in Rochester one more night just in case of complications and then drove home the next afternoon (Saturday).

The Long Drive Home

Within just a few short minutes, Dr. Kapa called back; what I was feeling was completely normal.

The drive was long, and I started to feel some discomfort around 9 pm. I called Mayo to explain what I was feeling. And within just a few short minutes, Dr. Kapa called back and explained that the abdominal pressure I was feeling was completely normal.

We arrived home, and I took it easy for the remainder of the weekend.

Back to Work On Monday

I reported back to work on Monday to simply work in the office and take care of email and other items that would not require much effort. I followed the typical instructions for lifting, exercise and remained pretty sedentary for the first week. Slowly things got back to normal.

I would remain on the blood thinner and metoprolol during the ninety day blanking period. That is typical. I resumed my exercise regimen and wore a heart monitor to make sure I stayed in sinus rhythm. Things went very well for my recovery.

March 2015: Three Month Follow-up

My testing and follow-up with Dr. Kapa in March of this year showed that he was very pleased with my progress thus far. All signs were positive. I had been instructed to discontinue the metoprolol about one week before this testing. I was now off of all medication including the Xarelto. Mission accomplished up to this point, but the journey will continue.

Advice About the Blanking Period

Dr. Kapa explained that the real measure of success will be when you successfully get through the blanking period and go out another year. Before that time, the A-Fib could come back due to the electrical pathways reconnecting over the ablated areas, etc. So, I appreciate every day I am out of A-Fib and am hoping for the best.

I do feel sporadic fluttering and did have a couple brief A-Fib episodes during the early part of the ninety day blanking period. But overall, I am very pleased with my result and that I am not dependent on any medication.

Tony Hall and Jill at Race.200 sq at 300 res

Jill and Tony Hall after they ran a 10K race (5-month post-ablation for Tony)

May 2015: No Meds and a 10K Run

This past Saturday, I completed a 10K run. My wife also finished the race, so it was a special day indeed. I beat my time from last year by a fraction. That was my first race since the ablation.

That was a milestone for sure.

However, I am quick to say that this is a journey. There is not a day that goes by that I do not grab my pulse when I feel a fluttering or something out of the ordinary. I have remained in sinus rhythm. I tend to notice this more while resting at night, but during the day I will have the occasional missed beat.

Lessons Learned: My Advice to You

Blood Thinners. Make sure that you follow the advice of your doctor relative to blood thinners. You do not want to take any chance of having a stroke that could have been avoided. This was impressed upon me at the Mayo Clinic. While you may have a low CHADS2 score, you are still at significant risk if you convert from A-Fib into normal sinus rhythm. Don’t chance it.

Ask questions and none are stupid. This is YOUR heart. This is YOUR life.

Ablation as Front Line Treatment. Make sure, if you desire to have an ablation, that your reasoning is sound and that you have a good argument as to why drug therapy is not the way you want to go. Having an ablation as front line treatment for A-Fib is not embraced by every EP, and many are reluctant to ablate until drug therapy has failed.

Be persistent and move on [to another doctor] if you are met with resistance.

Insurance Coverage. There is a very good chance this procedure will be covered by insurance if your EP indicates you are a good candidate for ablation. I was extremely concerned that ablation procedures may not be covered.

My entire procedure and all related testing were covered, and the Mayo Clinic was in my Anthem network. There were no extra out-of-pocket except for travel costs.

Tony Hall River Run sky added.250 x 400 at 300res

Tony Hall (5-months post-ablation) crossing the 10K finish line.

Be Your Own Advocate. Take personal ownership of Your A-Fib. Get Steve’s Book. My advice is to get Steve’s book and be your own advocate and coach.

The book “Beat Your A-Fib: The Essential Guide to Finding Your Cure” was given to me by my wife a week or so after my diagnosis. What a tremendous gift this book has been to me and can be to others, including family members, who are starting their A-Fib journey, and even for those who have had A-Fib for many years.

Ask Questions: None are stupid. This is YOUR heart. This is YOUR life. Learn as much as you can about your specific condition. Get a second opinion if you have doubts about the advice you are given. Make sure you find a facility that has good experience with ablation procedures and a doctor you trust.

Be Patient. This takes time. If you feel overwhelmed, that is normal. If you feel like it is not fair, so did I. Hang in there!!! Do not get obsessed with the internet. There is much misinformation on the internet, so do not get too caught up in that information. Good luck to you and God Bless you!

I have enjoyed sharing my story with you. Please feel free to email if I can help in any way at tony.hall(at)oldnationalins.com. I will respond as I am available to do so. Good luck with your journey.

Tony Hall
tony.hall(at)oldnationalins.com