A-Fib Patient Story #26
It Takes Three Ablations—Dealing with The “Paralysis of Analysis” that A-Fib Patients often Face—Faith and A-Fib
My Experience with Atrial Fibrillation
by Lou Aiello, 2008
Like so many others who have shared their experiences, I have found the experience of A-Fib to be life altering in many ways. While A-Fib presented a variety of challenges, it also provided an opportunity to learn of the kindness of others. I am particularly indebted to Steve Ryan for this amazing web site, but also for the many words of encouragement and insight that he provided to me during my journey in dealing with A-Fib.
I was initially diagnosed with A-Fib in May of 2006. I had experienced a particularly stressful week at work and was trying to enjoy the weekend respite. On Sunday I began to mow the lawn with the mindset that I would go fast to finish sooner than usual. However, I quickly noticed that I was becoming unusually tired and took a break. When I returned to the mowing, I quickly became tired again. I took my pulse and noticed that it was not an even beat, but was beating irregularly. Although I had been diagnosed with PAC’s, I had never experienced a heart beat like this. Since my daughter is a medical assistant, I asked her to check my pulse. She confirmed that it was not a normal heart beat.
My wife and I drove to Hershey Medical Center which was only a short drive from our home. When I arrived, they performed an EKG, which verified that I had an irregular heart beat. They put me on an IV drip of a drug designed to restore the heart rate, but also scheduled me for a Cardioversion the next day in case it didn’t work. The next morning, I was still in A-Fib, and I was just beginning to learn what the term Atrial Fibrillation meant. Thankfully, my heart rate returned to normal that morning.
At the hospital, I was told to avoid caffeine and to take Flecainide twice a day. Since they had given me blood thinners during my stay at the hospital, I asked when they could be discontinued. It came as an incredible shock to learn that I would need to stay on Coumadin indefinitely. At this point, the true gravity of the situation became quite real.
LEARNING ABOUT A-FIB
I desperately began to learn everything I could about Atrial Fibrillation and buried myself in the internet. As I learned more about the condition, I also learned more about the possible treatments. I was disturbed and confused about the outlook regarding medications to hold the A-Fib at bay. Flecainide was said to have an effective percentage of approximately 50 percent, which I did not find reassuring. I was also confused about how to interpret the meaning of 50 percent. Did that mean that Flecainide was effective in 50 percent of patients or did it mean that patients experienced 50 percent fewer episodes? My experience made this a moot point, as I continued to have A-Fib episodes. However, the Flecainide was proving to be effective in limiting the duration of the A-Fib events, at least initially, to around an hour.
Around this time, I began to learn more about catheter ablation. I also discovered this web site, which proved to be an amazing resource of information regarding the disease and treatment options. I went from feeling that I had a life sentence of A-Fib to feeling that a cure might be possible via catheter ablation.
As I continued my education, I experienced what perhaps many have experienced. I soon was affected by paralysis of analysis and often went from hopeful to fearful with each new piece of information. At these points (this occurred several times), I found that personal dialogue with knowledgeable people helped to provide a more balanced understanding. This occurred when I put these questions to Steve Ryan as well as to the doctors and nurses at Johns Hopkins and Hershey Medical Center. Information alone is one thing, but a continuing dialogue with real people helped me immensely in this regard. Their kindness and expertise went a long way in helping me deal with this condition. Another thing which helped was realizing at some point that there is an element of faith in moving forward. This is hard, because we all like to be in control; but putting this in God’s hands and in the people who are providing the care is invaluable in moving forward.
I asked my cardiologist about having a catheter ablation. While I was ready to jump head first into this procedure, he was much more conservative and encouraged me to give the medications a chance first. I was somewhat frustrated, although I now understand and appreciate his rational. After much thought and prayer, I decided to begin the search for a doctor who performed such procedures. This web site was very helpful, and I soon had a top three list of doctors who were well respected for their skill and expertise. Those three included Dr. Marchlinski at the University of Pennsylvania, Dr. Calkins at Johns Hopkins and Dr. Natale at the Cleveland Clinic. I was particularly interested in doctors with the most experience and the best success rates.
During an emotional down period with multiple concerns about this conditions, I contacted the Arrhythmia hot line service at Johns Hopkins. I spoke with a wonderful person named Pat Adams, who provided me with more information about A-Fib as well as some information about Johns Hopkins treatment of A-Fib. Pat also suggested that I speak with Valerie Barron, the nurse case manager of Electrophysiology. She provided information about my condition like no other person had done before. I asked a ton of questions, and she provided a wonderfully balanced understanding of my condition. Although my condition remained, I felt like a burden had lifted.
MEETING WITH DR. CALKINS AT JOHNS HOPKINS
The next step was a consultation with Dr. Calkins at Johns Hopkins in September. Incredibly, Dr. Calkins spent the first several minutes getting to know me, asking me about my work and learning more about me as a person. He then provided a very realistic picture of A-Fib and catheter ablation. I quickly learned that Dr. Calkins does an outstanding job of helping patients understand their options and make their own informed choices. Since I was only recently diagnosed with A-Fib, I left with the sense that catheter ablation was a serious option, but also that I had time to consider and see how things developed.
I discussed this with Dr. Naccarelli, my cardiologist at Hershey Medical Center. We discussed my visit with Dr. Calkins, and he again encouraged me to give this some time and changed the dosage of my medication. After several weeks, it was becoming clear that this A-Fib thing was not going to respond very well to this particular medication. In light of this, Dr. Naccarelli advised that a catheter ablation may possibly be in order. He also advised that Hershey Medical Center had recently hired Dr. Gonzales, who specialized in this procedure. Since this was in a nearby town, I felt that it made sense to meet with Dr. Gonzales as well. I felt comfortable discussing my condition with him and asked many of the questions suggested on this web site. He was quite knowledgeable regarding A-Fib and in fact held similar views as Dr. Calkins. After this, I had a decision to make.
It was tempting to go with the closest hospital for the procedure (since Johns Hopkins is about 1-1/2 hours away and Hershey Med Center is only a few short minutes). I was initially unsure, but after praying about it, I felt a peace about going with Dr. Calkins despite the extra traveling distance. I believe it was early December when my ablation was officially scheduled for January 30th, 2007.
As the days went by, any doubts about having this procedure were removed by worsening A-Fib episodes. The incidents occurred more frequently and also lasted longer as time went on. Valerie Barron, the electrophysiology coordinator at Johns Hopkins, was helpful as always by helping me understand my condition as well as manage changes in medications.
CATHETER ABLATION AT JOHNS HOPKINS
Finally, the day arrived for my wife and I to travel to Johns Hopkins. Prior to most ablations, it is typically necessary to have a TEE as well as a CT scan performed prior to the ablation. These were performed the day before the procedure on an outpatient basis. I can’t say enough regarding the kindness and expertise of the various health care providers.
The morning of the ablation arrived, and my wife and I walked from our place of housing to the hospital at around 6:00 AM. Everything went according to schedule, and I soon found myself saying goodbye to my wife as they wheeled me to the electrophysiology lab for the ablation. Although I was a bit nervous, I mostly felt a sense of peace, knowing that many were praying for me and also seeing the cast of professionals who were so highly qualified to perform this procedure. It was also reassuring to have my wife, Ruth, with me during this stay. Her kindness and strength made such a difference.
After a 5-1/2 hour procedure, I woke up in the recovery room. My heart was beating in a normal sinus rhythm. I enjoyed a light lunch and was moved to my room for an overnight stay. Everything went well, and I was told that I may experience some arrhythmias over the next few months as my heart healed. I also experienced some slight pain in my chest, due to the burning that is performed in an ablation.
I was released the next day. It felt good to be in normal sinus rhythm, despite catching a cold in the days leading up to the procedure. Over the next several weeks, I used the portable EKG device that I was given as part of a research study. It was an impressive piece of equipment that allowed me to easily check my heart rhythm each day. I had a few bouts of irregular beats, but they quickly reverted to normal. At this point, I was confident that I was moving in the right direction and anticipated improvement as my heart continued to heal from the ablation.
Unfortunately, after several weeks I began to develop episodes of Atrial Flutter. I wasn’t too concerned initially, but the episodes soon began to last longer. Around this time, I had a one month follow-up visit with Dr. Calkins.
The events surrounding this appointment were truly extraordinary. As a Christian, I have tried to seek God’s guidance through life’s various twists and turns. However, I am not the kind of person who typically seeks guidance through signs and wonders. So I found the following experience to be quite profound. A week or so before my 1 month appointment, I had a vivid dream about a visit to Johns Hopkins. In this dream, I had traveled to Johns Hopkins for a routine office visit. Instead of experiencing a routine exam, however, I soon found myself in a hospital bed. As I lay in the bed, I awoke to see catheters being removed from my upper leg region. I was told that another ablation had been performed.
SECOND ABLATION—FOR ATRIAL FLUTTER
A few weeks later, my wife and I traveled to Baltimore for my scheduled one month follow-up exam with Dr. Calkins. We arrived early, and my wife had an early lunch in the cafeteria. For my appointment, I received an EKG (which showed continued Atrial Flutter) and soon was greeted by Dr. Calkins in his office. He told us that the EKG suggested that the Flutter could be caused by activity on the right atrium (which had not been the subject of my first ablation).
He gave us 3 options to consider, one of which was Right Atrium Flutter Ablation. The others involved changes in medications, but they did not seem as promising. When we said that we would rather have the ablation, Dr. Calkins confirmed that he also felt that this was the best option. He then said that it was unfortunate that we would have to travel all the way back to Hershey and then return at a later date. He then gave a look that suggested that another idea had crossed his mind. He asked if I had eaten that morning and I stated that I had not (despite the fact that I normally eat breakfast). The next thing I knew, Dr. Calkins was having the schedule checked for the possibility of squeezing me in for an ablation that very day. He returned to his office and advised that one of his associates would be able to perform the procedure the same day. As this plan materialized, I couldn’t help but recall my vivid dream of a few weeks prior. The events had transpired exactly as shown in my dream!
Not only did Dr. Calkins arrange for everything, he also personally walked us from his office in the physicians’ wing all the way through winding corridors to the hospital wing. As we sat in the waiting room, we were in awe of how things had transpired and appreciative of Dr. Calkins’ kindness.
Editor’s Note: A right Atrium A-Flutter ablation is generally easier and simpler than a left Atrium Pulmonary Vein Ablation. The ablation catheter does not have to be passed through the Transseptal wall separating the right and left Atria. A full left and right Atria ablation could not be performed at this time, because it had only been one month since Mr. Aiello’s first PVA.
The ablation was performed on the right atrium, and I awoke in normal sinus rhythm. I appeared that my battle with A-Fib was over. However, a few days later I began to have more episodes of Atrial Flutter. They became more persistent as time went on, and it became necessary to have a cardioversion to restore my heart to a normal rhythm. Although a cardioversion is not usually curative, it was hoped that this could provide the extra push to help my heart remain in a normal rhythm. Sadly, this did not occur, and it became necessary to go on Amiodarone. This was not a happy day, as I had always had concerns about going on this medication.
Over the next few months, I needed to have two more cardioversions, one at Johns Hopkins and the other at Hershey Medical Center. During this time, I had appointments with both Dr. Naccarelli at Hershey Medical Center and Dr. Calkins at Johns Hopkins. I was impressed with how well these two doctors communicated with each other regarding my condition. It was so reassuring to know that both of these men were consulting with each other after all of my check-ups in an effort to address my condition.
By early May 2007, it became clear that another ablation procedure would be necessary. Dr. Calkins felt that it was important to have another procedure sooner rather than later. Because there was a longer wait time for Dr. Calkins, he offered to refer the procedure to one of his colleagues. But promised to arrange the schedule so that he would available for any problems that might arise.
As I awaited a specific date for the procedure, I continued to deal with atrial flutter and was feeling quite stressed out with everything. During a routine trip to my chiropractor, I ran into some friends who were incredibly supportive. They all gathered together to say a prayer for me, and I felt encouraged by their prayers and support. Having A-Fib can be discouraging, but it was good to be reminded that God hadn’t forgot about me.
A day or two later, I received a call from Dr. Calkins’ case manager Valerie Barron. She told me that Dr. Calkins decided to forgo one of his days off to perform the procedure himself. She said that he mentioned that I had gone through enough already and that he wanted to do this for me. My wife and I were so appreciative of Dr. Calkins’ kindness and also thankful to God for answered prayer. The date was set for June 7th, and I looked forward to that day with great anticipation. The only change from the previously scheduled procedures was that I would be under general anesthesia this time, due to some breathing difficulties with the sedative used in the earlier procedures.
THIRD ABLATION (SECOND PULMONARY VEIN ABLATION)
My wife and left for Baltimore on June 6th, the day before the procedure. Finally, the morning of June 7th came along, and we arrived at the hospital at around 6:00 AM for the CT scan and preparation for the ablation procedure. Once again, everyone at Johns Hopkins was wonderful in both their professionalism and in the care they showed to me and my wife. Finally after all the waiting, they wheeled me to the electrophysiology lab, and I said goodbye to my wife.
After the 5-1/2 hour procedure, I awoke in the recovery room. My memory is usually a bit fuzzy after this type of procedure, but I remember that my wife was there and I remember speaking with one of the attending physicians. Everyone seemed very optimistic about the success of the procedure. I was moved to my overnight room, and Dr. Calkins spoke with me and my wife about the procedure. He was very positive about the results and explained the steps that were taken during the procedure. If I recall correctly, he told us that they located and ablated some specific areas that were showing as hot spots for existing electrical activity. They also re-ablated all of the lines from the prior PVI and then ablated various “potentials” that were discovered during this time.
Editor’s comment: The O.R. [Operating Room] report indicated that some of Mr. Aiello’s A-Flutter may have come from gaps in the previous PVI ablation lines. Some current PVI procedures leave gaps, but they usually are filled in as the heart heals. Mr. Aiello needed a touch-up ablation to fill in these gaps and ablate other areas of the heart with A-Fib potentials.
IN SINUS RHYTHM, BUT POST-ABLATION SCARE
I was released from the hospital the following day in normal sinus rhythm and hoped for the best. I felt fine, although I noticed some swelling in my legs and began go have some rattling sounds when I breathed. To be on the safe side, I went to my local hospital’s ER and was given a chest x-ray. They discussed fluid in my lungs and discussed the possibility of congestive heart failure, which I found to be particularly devastating. They put me on a diuretic and advised that they would be sending a report to Johns Hopkins. Early the next day, Dr. Calkins called me on his cell phone on his way to the hospital. He put my mind at ease with more details concerning these medical issues. Although I knew that they used a lot of fluid to deal with the heat used in this procedure, I didn’t fully realize that it was an amount of fluid that could occasionally cause swelling in the legs and fluid in the lungs. I felt so much better after Dr. Calkins’ explanation and looked forward to continued recovery. It seemed like A-Fib was acting like the month of March in that it was going out like a lion.
I had a follow-up visit with my local cardiologist a week later, and I was pleased that he dropped the beta blocker. About a month later, I was taken off the Amiodarone per Dr. Calkins’ instructions.
By the time my three month check-up with Dr. Calkins came around, I had not experienced any A-Fib or A-Flutter to my knowledge. I had an EKG at this check-up which also showed normal. Dr. Calkins was very pleased that I had not had any episodes and advised that I no longer had to take any medications for A-Fib and would only need to remain on blood pressure medication. I was thrilled with the news and took the opportunity to express my appreciation to Dr. Calkins for using his talents to help me.
Five months later, I had another appointment with Dr. Naccarelli, my cardiologist in Hershey, PA. I was happy to tell him that I had not had any recurrences of A-Fib or A-Flutter since the ablation in June. After the examination, he gave me a good report that was in line with Dr. Calkins’ report during my three month check-up. He advised that I would not need to see him for another year.
This experience has focused my attention on my overall heart health, as there is some history of heart issues in my family. As a result, I am taking steps to eat a heart healthy diet, take supplements, get regular exercise and try to deal with stress more effectively. Dealing with stress is probably the most difficult area, and I continue to try to learn better ways to handle it. I still have periodic PAC’s, but otherwise things have continued to go well.
Although this experience has been very difficult, it has also served to expose me to some of the most wonderful people in the world. There have been so many times that I have been encouraged by Steve Ryan, who patiently answered my many questions and provided helpful information and reassurance. I have also been blessed by an incredible cast of professionals who have dedicated their talents and efforts toward helping others, including Dr. Calkins, Dr. Naccarelli, and Valerie Barron. My wife, Ruth, has been a constant source of strength and compassion in dealing with this condition, and having her with me at Johns Hopkins meant so much to me. Most importantly, I thank God for all of these individuals and ultimately for His healing touch.
In a later E-mail Lou writes: “I am happy to report that I am still in normal sinus rhythm which is almost one year since my last ablation by Dr. Calkins at Johns Hopkins. It is a wonderful feeling to have a normal heart beat each day, and it makes me count my blessings.”