If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

A-fib

Collapse

About the Author

Collapse

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
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • fausto.freire
    replied
    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

    Leave a comment:


  • fausto.freire
    replied
    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

    Leave a comment:


  • Ronnie
    replied
    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.

    Leave a comment:


  • williamm
    replied
    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.

    Leave a comment:


  • fausto.freire
    replied
    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

    Leave a comment:


  • fausto.freire
    replied
    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

    Leave a comment:


  • williamm
    replied
    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.

    Leave a comment:


  • williamm
    replied
    Hi Fausto,

    I don't know about other cardiologic centers but here in Brazil, septal reduction is mainly indicated in people with gradient over 50mmHg at rest AND if dual chamber pacemaker therapy has failed to decrease this gradient. And different from USA (I think), septal ablation has been the first choice due to its less invasive method. I hope you find soon a way to revert your a-fib. You were correct saying that as the more time you keep in a-fib is more difficult to revert it. But as you should know, the RF ablation process are evolving very fast. I have some friends here in Brazil that perform RF ablation and they was talking that a few years ago the maximum atrial diameter to perform this process was 50mm and with a very small success rate. Today is common to use this method in people with atrial diameter of 60mm and with a higher success rate. That will depend how many "wrong patways" has been created in your atrium and where they are localized.

    Best Regards,

    William.

    Leave a comment:


  • progers
    replied
    Hi Fausto,

    Good to hear from you again. I don't know the answer to the last question you asked. Perhaps others have an idea?

    Are you obstructed? It sounds as though you may be if you have a pressure gradient. I have also heard of people having a myectomy with an 18 or 19 mm septum. Remember that the normal septum measures around 10 mm so yours is almost twice the normal (mine was 30 mm before my surgery). Both the obstruction and mitral regurgitation put back pressure on the left atrium causing it to enlarge. This is why people who have mitral valve surgery and/or myectomy usually experience a decrease in atrium size and a reduction in a-fib.

    I have just read an older paper that suggests that those who undergo myectomy before 40 years of age are more likely to have a decrease in their left atrium size and a reduction in a-fib, when compared with those over 40. It may be that surgery can really help you as you are so young still. The paper is:

    Watson, C., et al. (1977). 'Effects of Operation on Left Atrial Size
    and the Occurrence of Atrial Fibrillation in Patients with Hypertrophic Subaortic Stenosis', in Circulation, Vol 55(1): 178-181.

    If you would like to read this I can email you a pdf copy.

    I will also meet with my Electrophysiologist on Thursday. He has talked with other specialists about my case, so I will give you a detailed report on what he says about the lates procedures for people like you and I.

    Take care and stay in touch.

    Paul[/i]

    Leave a comment:


  • fausto.freire
    replied
    Hi Paul:
    You are now in the amio load phase. In the fist few weeks taking amio, higher doses are used to impregnate amio in your body organs Yes, unfortunately in the entire body and not only in the hearth muscle.

    Your situation is different than mine regarding that you had afib after having a myectomy. Thus, I wish that in the future you don’t have afib again. Hopefully with time you atrium will reduce more in size since, as you know, an enlarged atrium is a very bad prognosis for recurrence of afib.

    Answering your questions: I was taking amio when I had all my afib episodes (except the first, of course). My last cardioversion did not work. That’s why I am not taking amio anymore. Now my afib treatment is for rate control since it is assumed sinus rhythm cannot be restored unless some sort of RF ablation or surgery is performed.

    About my case: You have raised a question that I have been thinking, but never asked my doctor or here in the forum.

    Before having afib, I did not have many symptoms or problems. My maximum gradient is 30-40 mmhg and my septum is about 18-19mm. Thus I don’t think (but I am no sure?) if a myectomy could help. Does anyone had a myectomy with this type of values?

    Next month I will do an echo to see how my mitral valve is working and how much is my mitral regurgitation. I think it should be a lot, since my left atrium is so enlarged (65mm). On July 12, I will have an appointment with my cardiologist to see if I need a mitral valve surgery and something more (maze?).

    This raise a question that I would like to pose to the forum (perhaps I should create a new post). What is more important for left atrium enlargement: genetics or degree of obstruction?

    Fausto

    PS I am waiting for new data (my next echo) to formulate more questions to the forum regarding my own situation

    Leave a comment:


  • fausto.freire
    replied
    First about dronedarore:
    Yes there were some problems but not when it was used for afib. More details below: One of the several studies being done with dronedarone was discontinued in the beginning of 2003. That study was called the ANDROMEDA (Antiarrhythmic trial with DROnedarone in Moderate to severe CHF Evaluating morbidity DecreAse) study. However, other studies with dronedarone have continued and are now in the final phase, namely: 2 trials in the maintenance of sinus rhythm in patients with atrial fibrillation EURIDIS (in Europe) and ADONIS (in North America, South America, Australia and South Africa).

    The results of these trials were presented last year showing that “Dronedarone is effective and well-tolerated in prevention of AF recurrence” http://www.eurekalert.org/pub_releas...c2_4082904.php

    Nonetheless, some doctors (including mine) said that the results were somehow disappointing and Dronedarone is not as effective as hoped (http://heartdisease.about.com/od/pal...ronedarone.htm). “Dronedarone may turn out to be reasonably useful as an antiarrhythmic drug - but apparently it's not going to be the "non-toxic amiodarone" we've all been waiting for.”

    Fausto

    Leave a comment:


  • progers
    replied
    Hi Fausto,

    I am taking 400 mg per day right now. I will be on that dose for 3 more weeks, then down to 200 mg per day.

    Fausto, did you take Amiodarone but it didn't work for you. Or you stopped taking it and went back into a-fib? If so, why will you not take it again?

    For some of us with HCOM, the risks associated with Amiodarone are probably much less than with staying in a-fib. Ultimately, a-fib leads to heart failure for many, particularly those who rely on the left atrium for cardiac output; this means those with significant diastolic dysfunction.

    I am also trying to buy myself some time so that I can realise the benefits of my myectomy 11 weeks ago. If I stay in sinus rhythm, there is a chance that I will be among the 50% of patients in whom a-fib stops. It is possible that myectomy improves diastolic function, leads to a reduction in left atrial size and perhaps no more a-fibs (see ACC/European Concensus on HCM).

    Fausto, perhaps myectomy is something you should look seriously at, particularly since you are so young? (you are obstructed right??).

    Take care and keep in touch,

    Paul

    Leave a comment:


  • Sarah
    replied
    There is another drug called dofetilide (Tikosyn is the brand name) that has been around for about three or four years now and it is a potassium channel blocker like amio but without the side effects.

    It does have a slightly higher rate of elongated QT intervals and must be carefully monitored and your compliance must be 100%. I took it for two years successfully before it started to fade out and stop working.

    I didn't have any other side effects besides the slightly widened QT which is ok as long as it is under 500ms. They watch you in the hosptial for three days when you start it to make sure you won't "go too far."

    Leave a comment:


  • Cynaburst
    replied
    I believe that dronedarone was found to have problems (I can't remember specifically what they were) and the trials of it were suspended. It is no longer on track to replace amiodarone.

    Leave a comment:


  • fausto.freire
    replied
    Paul:
    How much are you taking per day?
    Amiodarone is very dangerous in particular for high doses, such us 600mg/day. ut for small doses, sometimes it takes a long time before major problems.

    I was having 200mg 5 days a week for near 3 years without any major side-effect (besides sun sensitivity). I was taking it to gain some time before the next a-fib attack. Unfortunately it did not work for a long time. To tell the true I feel now much worse with the permanent a-fib, even that I did not want to take amio for a long time.

    Paul, perhaps amiodarone can give you some time without a-fib before you discover a procedure which can cure your a-fib. I am still hoping for that myself, but with much lower chances since as you know being in a-fib reduces the chances of curing it.

    But some good news: there is a new drug very similar to amiodarone, but hopefully without the side effects of amio. It is called dronedarone. It is currently in phase III development (last phase before being commercially available). It is very similar to amio but it does not contain iodine in its structure

    Some links with more information:

    http://www.news-medical.net/?id=4381

    http://www.drugdevelopment-technolog...s/Dronedarone/

    Fausto

    Leave a comment:

Today's Birthdays

Collapse

Working...
X