Dear All,
I had my second ablation with Dr. Natale on July 9th in Austin, and, as so many have reported, my experience there was excellent. The staff at Texas Cardiac Arrhythmia Institute (TCAI) and at St. David’s were both wonderful. For those of you who are newer to this Forum, I had my first ablation at St. Luke’s in New York City with Dr. Natale in August of 2013 after 19 years of paroxysmal AF that had progressed to persistent (24/7) in the five months prior to that ablation. You can read read more about my experience here:
www.afibbers.net.
Since my first ablation in August of 2013, I’ve had a number of breakthrough episodes of AF/flutter as well as some periods of ectopy, which most of the time did not progress to AF. My experience of these episodes was that the ablation was definitely limiting the duration and frequency of the episodes, most of which were, for me, relatively short (2-4 hours). From the beginning (1994), most of my AF episodes have been of several hours duration and leading up to the 2013 ablation, I had episodes that would last three weeks and then resolve for a day or two before going through this cycle again. [Note: if this is you now, please don’t wait as long as I did].
As I’ve written recently here, my experience since the first ablation has been that my quality of life was 90-95% better, and the total time that I was in AF was 5-10%. But I was having some kind of arrhythmia every second or third day, and even if resolved in an hour or two, I knew that it was unlikely to completely resolve (no episodes or greatly reduced number) at this point with the diet and lifestyle efforts I have been employing for 20 years, despite my best efforts. In May and June, I would say that I was actually much better than some of the times around the six-month mark after my first ablation, when I was very anxious about whether the ablation had been a success or not, knowing that I had had a number of breakthrough episodes. With the exception of the persistent AF I was in prior to my first ablation, I have always converted to NSR on my own, and except for a period of about six months when I was on Multaq (after the six-month mark past my first ablation), I’ve not taken AAR drugs or any other kind of drug for AF (I began Warfarin after I became persistent in 2013 and in preparation for the first ablation. I am CHADS = 0, but have been on anti-coagulation since March 2013). Multaq was definitely a mixed experience for me, and I finally elected to stop taking it in late February of this year right before I went to Austin to consult with Dr. Natale there and establish my patient records with TCAI. Dr. Natale approved of my decision to stop Multaq and my second ablation was scheduled for early July (last week).
I expected that with my long history of AF that the second procedure would likely involve isolating the LAA, since this is a frequent source of automaticity. Dr. Natale did not isolate my LAA in the first ablation, but he did create some delay around the LAA, which is more or less “standard” for his PVAI in someone who was moving toward longstanding persistent AF. He noted at the time of the first procedure that anesthesia can sometimes mask areas that otherwise might be ablated. While my experience immediately after the first procedure suggested that “one and done” was a possibility, it became clear after the blanking period that this was not likely.
For the second procedure, the electrical activity is again mapped and all previous lesions from the PVAI are thoroughly checked. In my case, Dr. Natale found one small area around one of the pulmonary veins that had reconnected, and one other new source that was a trigger for the recurrent AF (I don’t have a copy of my ablation report yet, so I don’t have all the technical details). Unusual in my case, I believe, was the fact that he found no source of the arrhythmia coming from the LAA, and therefore in this second procedure chose not to isolate that area. Obviously, this is very good news for me, given the life-long consequences of LAA isolation related to anti-coagulation. Like most here, if not all, I would like to be off all drugs. I was fully prepared to accept that I would wake up to the news that my LAA was isolated, and was more than willing to accept this possibility as a necessary step to eliminating AF.
Dr. Natale said that the involvement of the LAA is more often found among women, but he also cautioned that women often develop AF at a later age than men, so going forward it could be that 10 years down the road it might be necessary to return to the LAA if there was a recurrence of AF. He said that the data for men at my age (64) and history are not yet available, so it’s an open question about the probability of future LAA involvement.
I’ve been feeling quite well, if appropriately tired since returning home on Sunday, and I’ve taken the entire week off from work, as I did after the first procedure. I have a Linq heart monitor implanted subcutaneously as this is the preferred device for Dr. Natale’s office for people with a longer history of AF. The second procedure has been a shorter recovery for me (still in progress) because the duration was shorter and extent of the ablation was less than the index procedure. I was delighted that Dr. Natale did not require a Foley catheter this time around, and this certainly made the recovery easier. I gained four pounds from the water used to cool the catheter during the procedure, but quickly got rid of this after one day of Lasix. Heart rate is around 80, which is not as elevated as the first ablation, and I expected this.
With the hope that they may be helpful and the caution that these opinions and observations are personal and at times subjective, here are some thoughts from my experience of living with AF for over 20 years:
1. AF is complex and multifactorial. The etiology is unknown at present, and the fact that it can occur in otherwise healthy men and women and that it also occurs as a result of other illnesses/diseases has resulted in these two very different groups being conflated in some (most?) studies, since both are presenting with AF. In addition to this distinction, there are many others that make individual responses to suggestions/recommendations about supplements, diet, exercise, etc. highly variable. This has been one of the biggest frustrations for me personally over the years. Reading that a particular nutrient such as magnesium, for instance, is critical in addressing AF, I found that taking the recommended dose in some cases (or simply hoping that more was better) actually triggers AF. It has taken me quite a while to learn to trust my body’s reactions to food and supplements. I am reminded of the wonderful British physician Iona Heath’s cogent comment in answer to the following interview question:
Interviewer: What single unheralded change has made the most difference in your field in your lifetime?
Heath: The creation of an epidemic of symptomless disease based only on deviant biometrics. It is time medicine got back to its core task of attempting to relieve suffering.
Yes. And those of us with AF are suffering. My only point is that ignoring what you actually feel and observe in lieu of any particular set of numbers can create a disconnect, and it may be a distraction from more substantive information that might emerge from considering the appropriate numbers and also how your body reacts to the recommendation. As an article in the most recent AFIB Report suggests, 500 mg. of magnesium may lead to a magnesium deficiency (and other nutrient deficiencies) if your reaction to this dosage is “intestinal hurry.” To ignore this possibility and continue to take the recommended number will ultimately be counterproductive.
2. Most of the medical treatment options for AF reduce or eliminate the condition by addressing the symptoms of the condition, but not the causes of the condition, which remain mostly elusive. I wanted to find something that addresses the cause, because this was the only approach that I could consider a “cure.” There is nothing controversial in my position, and I would assume that it’s what any AF sufferer would want. Time devoted to continued learning about AF and suffering with the condition have led me to what I feel is a more realistic conclusion: while the treatments for AF are imperfect, there are some that are effective, and the increasing evidence is that the condition is not benign, as it was viewed when I was first diagnosed. If anything, the evidence continues to mount that, for most people, AF is progressive and the best chance of eliminating it is to address it early. Of course, I am on the outside of this curve, but I want to believe that the years I spent pursuing the best diet, exercise and stress management plans to create as much of a healing milieu as I could are one of the reasons that I’ve done as well as I’ve done.
If it seems that the emphasis on this site has been more favorable to ablation as a front-line approach to eliminating AF, it is, in my opinion, because ablation technology and experience, especially at the highest level, has improved exponentially in the past decade, and the results now have the greatest promise for long-term elimination of AF. Many of those here who support this position are among the most dedicated and disciplined in pursuing “holistic” approaches to AF, and I would count myself among those who have taken a very disciplined approach to nutrition, exercise, sleep and lifestyle. The issues for anyone for whom this approach does not provide compelling long-term relief (and there are several members of this list who have fortunately found relief from this approach) are: what is the measure by which I determine success, when increasingly the evidence is mounting for early intervention, and how long do I work with this approach alone if it is not providing substantial relief from AF? These are critical questions and the decision is ultimately an individual one in each case. You can live with the condition, or you can seek to eliminate it. If you choose to eliminate it, the medical option that has the most hope for the long term at this point is ablation and the sooner you seek this intervention with an EP of the first rank, the better your chances for living with freedom from AF are. If you choose to live with AF that is progressing to persistent in the hope that you will find the combination of healing elements that works for you, you may be taking a chance that, if you later decide to seek medical treatment, the odds of it being effective will be less because of the delay. This said, we know that the developments in the AF are coming fast now and I imagine that some breakthrough approaches and understandings will happen in the next 5-10 years if not sooner. This is a much better climate than the early to mid-1990’s.
3. Deviant biometrics and risk factor analysis can feed fear. Fear is outside the circle of support for your health. It is also unavoidably human. So, I frequently remind myself of the most fundamental understanding:
"For 100% of people, life is a risk factor.” @medmyths (James McCormack)
And that we live in strange times, comparatively speaking:
"Nothing has changed so much in the health-care system over the past twenty-five years as the public’s perception of its own health. The change amounts to a loss of confidence in the human form. The general belief these days seems to be that the body is fundamentally flawed, subject to disintegration at any moment, always on the verge of mortal disease, always in need of continual monitoring and support by health-care professionals. This is a new phenomenon in our society." —Clifton Meador, MD
I believe that the human heart is a miracle, and that our innate ability to heal is something that we don’t recognize and develop enough. We have evidence abounding of spontaneous remissions of fatal diseases. We know that the single most powerful bias in controlled studies is the placebo effect, and that it is often more effective that most powerful drug. We can hope that there will more exploration of how to rule the placebo effect IN rather than out. So, while the evidence is mounting that making a decision for early intervention of AF on all fronts is prudent for the best long-term outcome, I also feel that going into an ablation or any other healing process requires an alignment of mind and body. Intention matters. Thoughts matter.
"At the end it appears, so also lost her fear of the condition like I did, and then the AF just Ended.”[The Anti-Fib, July 9, 2015, responding on the forum to comments about Fran Ross’s miraculous remission, with dietary changes and quitting all drugs, after 20 years of persistent AF].
I don’t really want to think about how many AF episodes I’ve had. It’s in the hundreds. All but one (prior to my first ablation) ended with when my heart returned to NSR on its own. In recent years, I've always known when this conversion was going to happen, and it would often happen within seconds of my awareness of this feeling. The feeling is ecstatic and as far from fear as I can imagine. I learned to cultivate this feeling and to get to it more efficiently. This worked. And it’s one of the reasons that I knew I was doing better going into this second ablation. I was in a place of much less fear. While I know that some things are clearly out of balance, I have never seen myself as “sick” or “diseased.” I think it matters how you think about what you are dealing with.
I think embracing everything that contributes to your health and well being is the route that has worked best for me. I believe in the power of healing. I also believe that an ablation has provided me with the calm space I need to continue to heal. The two are complimentary, not adversarial. I see the whole thing as a process as much as I can, and living in the moment with the pleasures that each provides is the best way to ensure that the next moment will be what we might wish it to be.
With best wishes and gratitude for the support from this wonderful group,
Rob