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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • #16
    Paul,

    I am afraid also like you in start using the amiodarone. My doctors decided to use it in my first a-fib episode. Since I am tolerating well this a-fib, I've started the load phase (400mg/day) before the CV scheduled for June 20Th and if I return to sinus rhythm (I hope so) the dosage will be decrease to 200mg daily.

    I'm only 30 and that's clear that long term using amiodarone is not good. My setpum is about 28mm and have no obstruction at rest and about 5mmHg at 120bpm. My mitral regurgitation in classified as "discrete". I'm often questioned about to have a very thick septum but with no obstruction. The reason for this is that the hypertrophy is mainly at septum's base (far from mitral valve). The posterior wall also have normal thickness (about 10mm). I have questioned my doctors also to evaluate if some invasive method (like myectomy) would be useful in my case to decrease either the diastolic dysfunction and the atrium diameter (mine is 47mm) as a consequence. They discarded this possibility because it's only used to obstructive patients.

    The reason they have to decided put me on amiodarone is because it's more efficient to prevent a-fib recurrence. After my CV I will start to use experimentally an AT1 antagonist since researches in some countries (Brazil included) with non obstructive patients have shown about 10% decreasing in atrial diameter after 6 months with this med. If this happens also with me, they will also can take off this medicine with a higher probability that it will not return.

    So I think there is some relationship between atrial diameter and a-fib but I don't know if it's the only one. The other interesting question to help answering the first is there is some researches showing if myocytes disarray and interstitial fibrosis in only present in the hypertrophic areas or in the whole heart of a HCM person.

    Unfortunately there are more questions than answers...

    William.

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    • #17
      Hi Paul,

      Yes I am obstructed. The existence of a gradient (in velocity and pressure) indicates that there is an obstruction. No gradient no obstruction! I think…at least that’s what I can remember from my fluid mechanic course (more than 10 years ago…)

      Can you please send me the article you have mentioned ([email protected]). At the university I only have access to papers from the last 10 years and that's a very old paper...

      And please send me details from your meeting with the Electrophysiologist. If possible, please ask him:
      What about people with HCM and left atrium size with 65mm. Is radio frequency an option?

      Good luck for the meeting

      Fausto

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      • #18
        Hi William

        Muito Obrigado!!! (Thank you ) for the information. Yes I have realized that RF ablation is evolving very fast. Would it be possible for you to ask your friend if for patients with HCM and left atrium size with 65mm they would consider the radiofrequency ablation as a possible procedure and what would be the expected success?

        Next month I will have a meeting with the doctor that was supposed to do my radiofrequency ablation (when my left atrium size was 57mm) and I would like to know what is being done abroad. If my doctor does not give me good news I am thinking of visiting some doctors in Bourdeaux or Milano.

        By the way, I have some friends from Sao Paulo and they have told me that in Sao Paulo there are excellent cardiologists. They have invited me to go there and try to meet those cardiologists. Unfortunately Brazil is a little bit far from Portugal…

        Another request: can you please send me one article reference about the AT1 antagonist you are taking. I am curious... It only works for unobstructed or also for obstructed HCM people?

        Fausto

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        • #19
          Fausto,

          Currently they don't perform RF ablation with atrium size over 55mm here and they could estimate a success rate below 30% in your case. In fact, they have told me that Dr. Pappone (Milan - Italy) has probably the best success rate published already and he would be a great source for you. The Cleveland Clinic is another choice.

          Regarding HCM specialists, we have here in Sao Paulo the Brazilian Heart's Institute with very good doctors acting in HCM researches and therapies. Several international doctors (like Dr. Barry Maron) have been here over the last years to check the already published information. The doctors are working with data published by the Bayllor College of Medicine (Texas - USA) in the last five years to develop new HCM therapy methods.

          Regarding the AT1 antagonist study, you could find an article's header (in Portuguese) in http://congresso.cardiol.br/60/temaslivres/default.asp (ID: 3340). Initially the study is being applied only in non obstructive patients. Anyway, I will try to get more info next week since my cardioversion will be there.

          Best Regards,

          William.

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          • #20
            I'm finding this discussion on Afib, so interesting. I had my first Afib episode 2 days after Myectomy. I was given IV Amnio, then cardioverted 48 hours later. The cardioversion, was sucessful, however I went back into Afib 8 hours later. They dripped Amnio for 48 hours & I converted on my own & went home with oral Amnio. I stopped the Amnio after 3 months, with no episodes of Afib. Then a year later (last fall began having isolated episodes lasting 1-24 hours. I tried Amnio again, but could not tolerate the side effects.
            I currently take Coumadin, as my only therapy for the Afib.
            My question is-I find myself going in & out of Afib, about once a week, it lasts no longer than a couple of hours & I convert on my own. What is causing this? My cardio has given me a 1-month TTM to record & transmit these times, so he can evaluate. Do others have this type of Afib experience? As time goes by I find they are less severe (or I'm just sued to it). Some nites it wkes me up & then passes within a few minutes.
            I'd like to read about others Afib experiences.
            RONNIE

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            • #21
              William: thank you very much for your prompt reply.

              The information you have sent was very similar to what they have told me here in Portugal. In fact, they were willing to do the RF ablation when my atrium was 57 mm, with an expected success of about 50%. But with my left atrium around 64 mm, they said the probability of success were very low (20-30%) and so they cancelled the ablation. In the next month, without good news here in Portugal I will probably contact Doctors in Bordeaux (Haissaguerre and Jais) and Milan (Pappone). Although Pappone has the best results published (but not much different from Bordeaux), I have heard better things about the Bordeaux group. Also they are cheaper than Pappone and they were the first ones to do this type of ablation.
              Anyhow the main problem is that I don’t think they are willing to do a RF ablation in my case. Or if they want do it, probably the estimated success is very low (less than 50%...). Thus I am waiting to have more data about my case and meet again with my cardio to decide what to do.

              I have seen the abstract in the link you have sent. After a quick search I found out that losartan should used very carefully in patients with obstruction.

              Good luck for your cardioversion. You should have no problems, you left atrium is not very enlarged.

              Fausto

              Comment


              • #22
                Hi Ronnie,

                I have heard of people with your type of afib. I guess your left atrium is not very enlarged. By the way, what diameter?

                Another question, why are you not taking any antiarrhythmic drug? It seems to me that you should be taking something, perhaps sotalol, since you could not tolerate amio.

                If your afib does not stop with drugs, a good thing is that RF ablation has usually a high cure rate for your type of afib.

                Fausto

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