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JoAnna Find out more about JoAnna
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  • AFib

    Hi Everyone, I posted awhile back that I had gone into AFib as a result of the prep done for a colonoscopy. At least that's what my doctor is suspecting. I'm posting with a new email address, so now I am JoAnna, instead of JoAnn. So anyway, It has been about 5 weeks since I have been diagnosed with Afib, and it has been quite a learning experience. I'm finding myself really worried and scared a lot of the time. I guess I thought it was going to be a quick fix, and I would have a cardioversion and I would be back to normal. I am on Coumadin and still in the process of finding the right level for my blood in order to have the cardioversion done. I was taking too much and started to get dizzy spells all the time. They lowered my dosage and now I don't feel dizzy anymore, and my blood is being tested weekly. But the Afib is making me feel really out of breath a lot. I am pretty much a couch potato these days. I go to work, and I am ok. I have a desk job, so I don't feel to uncomfortable most of the time. I am very thankful for that, but this weekend I tried to do my house work, and boy did I get a wake-up call. My metabolism is pretty much at 0 these days, at least that's the way I feel because I really don't eat half (my hunger level has really decreased) of what I used to and am still gaining weight or just barely staying at my present weight which increased by about 10 pounds in the past 6 weeks or so. It's so frustrating. My doctor keeps telling me to hang in there because as soon as I can have the cardioversion, things should get better, and I will probably(?) be able to do light exercise again. He tries to explain how because of my heart not working as efficiently as before that I'm retaining water and this is probably a majority of my weight gain. I am also on a low dose of a diuretic. I never thought I would miss exercising. But I would give anything to be able to go to my yoga class again. But he is honest about the fact that the cardioversion may not work, and I may have to take meds for the afib. I guess I'm just scared. The shortness of breath is so scary to me, and I can tell my friends get scared when it happens. I have always been blessed with no HCM symptoms most of my life, and I am having to face the fact that I do have a condition that can be serious. I'm so glad I found this website to be able to express my feelings and fears to those who understand. I find myself holding back with my friends not to scare them. Thanks everyone for being here. I also have to tell you all that have had to deal with the symptoms longer than me, and some much worse than mine, that I really respect you all for the strength you show, You are all such an inspiration to me. I will keep you all posted.
    JoAnna

  • #2
    Hi JoAnna (or JoAnn.) I don't know a lot about afib but has your doctor mentioned congestive heart failure? The water retention and the fact that your heart isn't working as well as it could is what I would think is probably CHF. You may need a change of meds to help with this.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      afib is yucky

      Dear JoAnna,

      The first time someone is in afib is the worst. You can't do anything, you're tired all the time, it is all you can do to get out of bed or off the couch.

      Coumadin is also tricky and it is very common to have a hard time evening it out. Please search this board for coumadin posts b/c i think i've stuck some good info in there at some point.

      the key is to remember that you can eat whatever you want, just eat the same amount each week. also, the little coumadin booklet on what has a lot of vitamin k in it is totally useless. oatmeal, strawberries, and lots of non-green veggies have enough vitamin k to throw you off. you can find vitamin k links in my previous posts and through google.

      as for getting back into afib, it is totally realistic for you to get back into it. most people convert quite nicely, really. the key to THAT is getting on a good med that keeps you in it. what are you taking? something like betapace, norpace, I hope.

      and yes, hang in there. DO NOT PUSH yourself to do too much. If you have to clean, do it in 5 min (gentle) bursts and rest in between.

      keep us posted,

      s

      Comment


      • #4
        Hi Joanna,

        Whats the latest on your A-Fib? I know how it feels - I have just gone back in to A-fib for only the second time ever and it sucks and is scary. The only other time I was in A-Fib was 2 months ago after my myectomy. The doctors waited 5 days and when I didn't convert on my own they did a cardioversion which was succesful. I was great for the next 6 weeks until wammo this morning I was back in A-Fib.

        How come your doctors have waited so long (5 weeks) to do your cardioversion? I was getting warfarin for only a week or so before they converted me - but they did a TEE to check for clots.

        Take care,

        Paul
        Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

        Comment


        • #5
          thinning is hard

          I think she said that they can't get her coumadin to be theraputic --and in the US you have to be theraputic for three solid weeks before they'll convert you. I think I went a good two or three months the first time.

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          • #6
            My INR was sub-therapeutic before my AICD placement and I had to wait 3 additional weeks for the surgery. I was told there is a 6% risk of throwing a clot/having a stroke from the combination of INR being too low and the defib they do to test the ICD after the placement. Once I heard the 6% figure I figured I was willing to wait the 3 weeks!

            Regards,
            Rob
            --Living life on the edge .. of a continent!
            Charter member: Tinman Club

            Comment


            • #7
              Do they still have to wait for the coumadin to be theraputic if they do a TEE? Soomehow I just know that I won't convert on my own and hope that my doc will arrange a cardioversion ASAP: I am getting terrible symptoms right now while I am in A-Fib. But until this, I was starting to feel great after the myectomy.

              Cheers,

              Paul
              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

              Comment


              • #8
                Any comment I have on the TEE and INR levels would be purly uneducated on my part about the TEE procedure. Having alreadynadmitted ignorance I'd guess that INR being lower than therapeutic wouldn't stop anyone from doing a TEE. Someone with some knowledge on the subject might care to comment.

                Regards,
                Rob
                --Living life on the edge .. of a continent!
                Charter member: Tinman Club

                Comment


                • #9
                  tee-s

                  Here is an excellent article on a study the Cleveland Clinic did comparing the two approaches. They found almost no difference.

                  http://www.clevelandclinic.org/heart...Echo/acute.htm

                  Having had both good and bad TEE experiences, let me recommend that if you are under 50 or particularly in shape or know you have a high tolerance for medication or a super strong gag reflex --as for LOTS of anethetic for your throat whenever you get one.

                  I am 36, 5'3", 115lbs and need 7, yes SEVEN shots of Versed to get the probe down my throat. (They have to stop your gag reflex so the ultrasound cable can go down.) They were used to medicating people in their 60s and 70s and were not prepared for a strong reflex. And usually I only need a tiny bit of medication (as in half an adult dose) to get the same effect as a whole dose.

                  This was at my local teaching hosptial (that has an excellent reputation). I couldn't swallow for 24 hours afterwards. Have you ever tried to take your medication without swallowing? One word: applesauce.

                  When the Mayo Clinic did my TEE, it was textbook perfect and I wouldn't have known I had had one if no one had told me. The Versed makes you forget what happened even though you are awake for the procedure.

                  Here is a link to "What is a TEE?" http://www.heartsite.com/html/tee.html

                  Comment


                  • #10
                    Hi Everyone, Paul I am sorry to hear you are in such discomfort. I hope things get better for you real soon. Sarah, thanks for all your input on AFib. You have been through so much. You are such an inspiration. I am still on Coumadin waiting for the right time for my cardioversion. My blood test last week showed that I was finally in the right range, and now I have to keep it there for about three weeks until they will perform the caredioversion. As Sarah explained in one her previous emails, they will not perform it any sooner because of the risk of stroke. No one has mention TEE to me. I had not ever heard of it until I read the postings. Also my doctor told me he was going to see how I did after the cardioversion before he would put me on any meds to keep me in sinus. I guess he wants to see if I will stay there on my own. I do currently take 150 mg of Atenolol daily, and have done so for a very long time. Does this med have anything to do with keeping your heart in sinus? I did call my doctor last week because it seemed that my sob was getting worse. They took some chest xrays, and there was no fluid in my lungs. Everything else seemed ok, so they ruled out CHF. I was so relieved. A nurse actually took the time to sit with me and explain exactly why they have to wait for the cardioversion, and also talked to me about about my symptoms and made me feel a little more at ease. I am just freaking out at all this. But after talking to her and reading all your posts, I feel better and not so alone in this. I am trying my best to take it as easy as I can. Getting out of bed is hard, and some days are better than others. My dear nephew who is 13 actually came over and did all my housework for me this weekend. He said he would help me out anytime. That alone was worth all the worry I have been going through lately. Hang in there Paul, let us know how you're doing.
                    JoAnn

                    Comment


                    • #11
                      Joanna,

                      Sounds like you are also having a very tough time indeed. Like me, you are also not handling the a-fib very well. I am barely functional right now and it is an effort to even go to the rest room.

                      I must say I am surprised no one has mentioned a TEE to you. This is an internal echo which they do to make sure that you do not have a blood clot in your atrium. As I understand it, doing a TEE is a precaution against stroke - just like taking warfarin for 3 weeks is.

                      After my myectomy I was in a-fib for 5 days and they did a TEE prior to doing the cardioversion. I only had heparin shots for 5 days, not 3 weeks.

                      I hope you get your cardioversion done ASAP. I've read that first time cardioversions are usually successful, so that should be of some comfort to you.

                      I'll keep you posted - hopefully I will have good news in the next day or so.

                      Cheers,

                      Paul
                      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                      Comment


                      • #12
                        tees and drugs

                        Atenolol is a betablocker and it mostly softens the heart beat and lowers blood pressure. It has some ability to temper an arrhtyhmia but is not as strong in that area as sotolol (a hybrid betablocker), disopyramide, dofetilide, and amiodarone (in that order).

                        Doing a TEE and cardioverting very quickly is just not standard procedure everywhere. I don't know the guidelines for when they will do it or not.

                        It is certainly something you can ask about or even demand. I highly recommend reading this page and giving it to your doctors: http://www.clevelandclinic.org/heart...Echo/acute.htm

                        S

                        Comment


                        • #13
                          Sarah, Thanks for the reading material on Tee. The next time I see my doctor is June 1st. I'm going to ask him about it . I'm curious to hear his opinion. In the meantime, I guess I will hope that he can give me good news that day, and tell me it's time for the cardioversion.
                          Also, I'm wondering what's going to happen if I need another surgery for something completely different. The reason I got to this point is because I started having really bad pains in my left side, and for months had been going to other doctors to try and find out what was going on. that 's how I got to the point of having a colonoscopy (which was ok). the rest is history. Here I am in Afib dealing with that, but also still having bad pains in my side. One of my other doctors seemed to think it was a hernia, and would need surgery. I know I have to deal with that after the Afib problem is dealt with, but I'm wondering if it's safe to have surgery. I'm scared it will send me back to Afib. My cardiologist told me I would have to be off Coumadin for awhile before they would do any other surgery, and for now I shouldn't worry about it so much. But when the pains start acting up, it's kind of hard to not worry about it. I guess I have to just take it one day at a time. I'm getting such a lesson in patience these days.
                          JoAnna

                          Comment


                          • #14
                            surgery

                            I haven't seen any data on surgery causing afib. I suggest googling a bit to see what you find.

                            As for Coumadin and sugery, make sure they transition you from Coumadin to Lovonox shots (sounds worse than it is. I despise needles with a passion and I learned how to give myself these. they are a only little jab, not a big needle) so that you are anti-coagulated until just a few days before and after any surgery.

                            They took my mom off Coumadin for six weeks, thinking her afib was well controlled and the resulting stroke has destroyed her life. She has lost years of memories of her life and lost the use of her right hand and walks with a cane. She also can't remember new things either, very well.

                            I don't mean to scare you, just saying make sure you are off a blood thinner as little as possible.

                            good luck with the side pain.

                            Comment


                            • #15
                              Joanna,

                              What's the latest on your a-fib? Can you press for a TEE to get it taken care of sooner rather than later?

                              Sarah, I'm really sorry about your mom. I will definately keep taking warfarina after hearing that.

                              Take care,

                              Paul
                              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                              Comment

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