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Has anyone got off of Coumadin?

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  • Has anyone got off of Coumadin?

    I was put on Coumadin in October 2003 after Afib and I hate the effect it has had. Has anyone ever gotten off of it after being put on it? Please tell me your story.
    Jeremiah 29:11

  • #2
    Hi JS

    I've been on Coumadin since May of this year because of my persistent AFib. Docs have indicated that I might be able to come off if a cardioversion was to be successful.

    I don't like the fact that I'm on this medication, (did you know that warfarin is the active ingredient in rat poison??) -however I can't say I have noticed any bothersome effects from it.

    Don't mean to scare you about the rat poison bit, but I like to know exactly what's going in my mouth. I am closely monitored, I'm sure you are as well, and there is good science behind the use of this drug.

    Before I changed primary care docs, blood had to be drawn in the standard way to check PT levels. I have to say my arms started to look pretty ugly from the bruises. The new Doc uses a "finger-stick" with instant analysis. This is a much easier process to deal with.

    To be honest with you, I think I am more likely to die from a stroke than from any other effect of HCM. Coumadin is my most important medication.
    • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
    • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
    • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
    • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
    • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
    • 2011: Brigham & Women’s - Medtronic ICD implant

    Comment


    • #3
      Coumadin

      Gee thanks for the heads up about rat poison. I was put on the med after one incident of afib that went back to its previous normal rhythm. The doc also put me on rythmol (propafenone). I have moved and will be seeing a new doc beginning Feb. 1st. When I see him I am going to ask him to check me out thoroughly and with the rythmol determine whether I still need coumadin or not. This was my first and only afib event. I also need to lose weight. It just seems there is never a happy medium. When I get to what seems to be a sustainable level or coumadin, they do the PT and tell me to up the dose, then I get massive nose bleeds, like every day kind. It is very frustrating. I really hate this medication. I don't mind the betas and the rythmol I have lived with them over twenty years now. Coumadin is a whole other animal so to speak. Thanks bunches for the encouragement. I know it is an issue I have to pay attention to. As I get older it seems I need to pay more and more attention to my problem.

      Thanks again.

      Call me: Jason
      Jeremiah 29:11

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      • #4
        P.s.

        P.S. Boz, Merry Christmas!
        Jeremiah 29:11

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        • #5
          And Merry Christmas to you Jason!

          Seems that if you are indeed in normal sinus rhythm and are staying there, should be no need for the coumadin protection.

          Something to be aware of - alcohol and some medications will potentiate the effect of coumadin and cause the PT INR level go up. Several drinks after a doseage increase could cause a big upward swing and unexpected bleeding.

          Conversely, green leafy veggies (vitamin K) has an opposite effect.

          Good luck with it.
          • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
          • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
          • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
          • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
          • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
          • 2011: Brigham & Women’s - Medtronic ICD implant

          Comment


          • #6
            coumadin, food and poison

            Hi

            I know first-hand how hard it is to get Coumadin under control. I discovered that there were a lot of foods that were not in the little booklet the doctor gave me that have a lot of vitamin K (clotting factor) and some vitamins/supplements that thin your blood (gingko, vitamin E, flaxseed oil, omega-3s, etc).

            Take a look at everything you are eating/drinking/injesting and see if you can level some things out.

            Also, warfarin is used as rat poison because it is a blood thinner --it isn't a poison in and of itself like we think of it. It is used on rats b/c they are too smart to eat stuff that kills them instantly, so people discovered that if the rats ate something that killed them slowly by making them bleed internally, they couldn't connect up the death with whatever had the warfarin in it.

            As for the blood work --I have a home monitor that helps a TON. It is a finger stick, which doesn't bruise or leave tracks up my arms and I can test as often as I need to if I've had an uneven diet that week.
            http://www.hometestmed.com/inr_meters.asp

            take care,

            Sarah

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            • #7
              Sarah-

              The Protime monitor at the hometest link is the exact monitor used at the coumadin clinic I visit regularly. I am sure it is acurate.

              Do the readings you take for yourself satisfy the Docs? Seems my Drs. want regular readings submitted from the clinic.

              A little tip that I was just given this week. I have had some nose bleeds recently and suspected the coumadin level as being too high (I've been at the 2.9 - 3.2 level). If bleeds are brought under control with usual effort - they have been in my case - then you can't blame the coumadin. Instead, consider the cold weather and dry heating conditions as a possible cause.
              Non-medicated saline nasal spray is available at the drug store. I am trying it now. It has made breathing at night easier - no bleeds as yet.
              • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
              • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
              • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
              • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
              • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
              • 2011: Brigham & Women’s - Medtronic ICD implant

              Comment


              • #8
                I've been on coumadin for a little over a year now. In November I started having nose bleeds. I was concerned thinking it might be my coumadin not being regulated properly. I, like Sarah, found the problem to be dry air in our house and the cold air outside. I've since got a humidifier and I have less nose bleeds.
                Esther

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                • #9
                  Coumadin

                  Hi, I was put on the Rx when I left Cleveland Clinic after sugery last April, because of A- flutter and fib. In mid May 2004 during a pacemaker check and ekg, it was determined I was in normal sinus rythem since early April 2004, so I was removed from coumadin and it was replaced by one 325mg aspirin per day. I am doing very well with no problems.

                  My myectomy and double by pass was done last March 18th and I had my dual chamber pacer implanted April 13. It was delayed because of massive infection.

                  Today I can do things I couldn't do years ago, thanks to God and my wonderful surgeon and staff at CCF.

                  Ralph

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                  • #10
                    I was weaned from coumadin as soon as I was converted back to normal rythym...........

                    I wouldn't want to be on it either if I didn't have to.

                    Heather
                    Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

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                    • #11
                      getting off coumadin

                      doctors differ on how to handle coumadin for afib patients. some doctors feel that if you have been in afib once, you are at risk for it again so they keep you on coumadin forever.

                      others will let you go off it once your afib is gone.

                      my family history indicates that it would be poor judgement to stop the coumadin.[/i]

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