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Just diagnosed

Posted , 6 users are following.

smorse84
smorse84

Hi all - I was just diagnosed with atrial flutter. I do not feel rapid heartbeat, shortness of breath etc. but have been prescribed warfarin. I already knew I have Tetralogy of Fallot but was told these are two completely separate conditions. Just looking for any advice on living with this, success stories, tips etc. I am having an Echo tomorrow. Thanks to one and all.

0 likes, 17 replies

17 Replies

  • jay7196
    jay7196 smorse84

    Posted

    Hi. I have A-Fib, for 3 years now. My Amiodarone 200 drug works well, so well that for the past year I have been cutting them in half, so its only 100 a day. I was having horrible rattle sessions, not any more.  I refused Warfarin and any other drugs,  a few side effects but to me this drug is worth it to be fear free. Of course my diet has changed, no caffeine, no more half a box of after eights, small meals. I hope you never feel the rattle, good luck . . .
    • smorse84
      smorse84 jay7196

      Posted

      Hi Jay - Thanks for sharing your story. I'm pretty sure I have already experienced the rattling sad I went to my local clinic today to get a cough checked out that I have had for a couple of weeks, thinking the rattling noise/sensation could be due to a pneumonia but no such luck. (Not that that would have been anything pleasant!) I have cut caffeine since I had a migraine last month, not sure if that and associated tests could be anything to do with this but I intend to ask tomorrow. Today they said continue with my regular activity etc but I just don't know how someone could live in constant fear of having an episode.

    • derek76
      derek76 jay7196

      Posted

      You are fortunate not to have had severe side effects from Amiodarone as so many of us have.

      Why did you refuse Warfarin and other drugs?.

       

    • jay7196
      jay7196 derek76

      Posted

      Dear Derek. I have chronic bronchial asthma and have survived on drugs my whole life. I am accident prone and have broken myself mostly all over. I usually discharge myself from hospital when when I can walk ( after I have seen the x-rays) Now this AF rubbish is the last straw and I will use the Amio (the only one that has worked) but nothing else. Enough is enough. Thakyou for your interest Derek - - -  
    • suzanne48640
      suzanne48640 derek76

      Posted

      I also am on amigo. After a year of various drugs and a pacemaker, this seems to be the only one that keeps me in NSR. I hope to have surgery for a second ablation (first one didn't work) in November so I can get off it. Can u tell me what side affects u had and how long after u started taking amid did they appear. Thanks. Suzanne's

    • suzanne48640
      suzanne48640 jay7196

      Posted

      After a year on a thousand different meds for afib, the only one that has worked for me is amiodarone. I am fully aware of the negative side affects and plan to INSIST that I be monitored regularly. I am also hoping to be off  3 months after my second ablation which is scheduled for 12/14. 

       

    • hhanover
      hhanover suzanne48640

      Posted

      Suzanne, I was on amio but I got scaredy and quit it. However millions of people take it without ill effects. My prediction, based on overwhelming statistics, is that you'll do fine. Good luck.

    • suzanne48640
      suzanne48640 hhanover

      Posted

      Thank you SO much for yur words of encouragement.  I cannot tell  you how much they mean to me because I am very afraid of it too.  Suzanne
  • hhanover
    hhanover smorse84

    Posted

    I was diagnosed with atrial flutter and underwent a right sided ablation which fixed it. My flutter seemed to be caused by Flecainide. Doc gave me the Flecainide, caused the flutter, put me in the hospital, did an ablation and fixed the flutter. Job insurance. I could feel the very rapid heartbeat, so the treatment was necessary for comfort. 

    Goofy heartbeats apparently increase our risk of stroke, hence the Warfarin. I have been on that for a bunch of years (atrial fibrillation) with no bad effects. 

    Best of luck to you. Multiple heart problems can be treated by Three Stooges movies. An upbeat attitude is healthy, hence the movies.

    • smorse84
      smorse84 hhanover

      Posted

      Hi H - thanks so much for sharing this. My grandmother was diagnosed with A-Fib and luckily did not need an ablation before it got straightened out. Anything having to do with my heart scares me so sad I had a complete repair and recovery from the ToF but it's almost worse having something new. My heart rate/pulses have been fine right along and so has my blood pressure so it seems we have caught it early enough that medication might be the only treatment I need. I think I will feel somewhat better as I did not speak to an actual cardiologist today and hopefully will have the chance tomorrow.

  • suzanne48640
    suzanne48640 smorse84

    Posted

    Only suggestion would be to see if your doc will prescribe one of the newer blood thinners that does not have monitoring or dietary requirements.  Don't get discouraged with the number of drugs they try, as there seems to be a million different ways to treat afib and everyone reacts differently. Good luck. 

    Make sure your become as pro-active and as knowledgeable as u possible can.  

    • smorse84
      smorse84 suzanne48640

      Posted

      Thanks so much Suzanne. My mother in law was just telling me that there are a bunch of different options available so I'm going to speak with my primary doctor and cardiologist and see what they think is best. Left a message with my cardio this afternoon but didn't hear back yet so I'm HOPING he got the message and didn't think it was an emergency. The problem with trying to become knowledgeable is reading all the scary things that have happened to people and trying not to get my anxiety up sad They didn't say I had to be admitted to the hospital immediately so that has to be a good sign.

    • suzanne48640
      suzanne48640 smorse84

      Posted

      If you have YouTube, there is a wonderful video:  UCSF Afib.  It's about half an hour but well worth the time it takes to view it.  It is very informative and may put some of your fears to rest.

    • jay7196
      jay7196 derek76

      Posted

      Derek, I am hoping you will answer my question ? Just had my yearly tests and it has marked colesterol total 300 mg/dL and colesterol das HDL 58 mg/dL. Can anyone explain this ? Do I need drugs to lower colesterol ? OR  can I use natural supplement? I have an appointment near Xmas so I reqally want to know now. THANKYOU.
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