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Sharing Med Info

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Linda Find out more about Linda
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  • Sharing Med Info

    I was reading thru new postings this am and read Wade's posting under the question of statistics on ablations. He gave some excellent suggestions on getting the care you need, most concerning "$$", as he said. I decided to start a new thread on one of his suggestions, as I think it's good to remind us all occaisionally.

    One of the most important things he noted was keeping all docs in the loop. We share a lot of info here on the message board and that's a good way to help others know what to expect or maybe trouble-shoot for answers, but our primary source of info should come from our own docs who know the whole history. Often, something that seems rather insignificant to us may be a big deal to the doc who knows and is on top of things. Everything is so individual and one little quirk about a person can make the whole evaluation and treatment plan different. Your first questions about test results should be answered by your primary doctor or cardiologist. After you learn what the results mean for you, you may or may not want to post actual numbers. If you and your doctor are not communicating well enough, you may have a tough decision to make as to whether that doctor is the right match or you may need to find a doctor that works better for you. Strange as it may seem, sometimes the doctor thinks communications are fine, he/she just needs a wakeup call. Give it a try. So many different people give us a lot of excellent input to help answer questions and understand info here on the message board, but the whole picture just isn’t there for the individual person. We can only give general info; your doctor needs to paint the clear picture for you. Also, info you share here is an open book, and you may change your mind later about how specific you really want to be. Of course, you can always edit your own post(someone will correct me on this if I'm wrong), and feel free to do that anytime you want to. Linda

  • #2
    Re: Sharing Med Info

    Linda

    I agree totally, everyone is different, and if i am going to have surgery i would trust my dr. and he would know me better, when i posted the other day i wasn't asking for advise i was just telling everyone what was going to happen in the next few weeks, i love coming to this board i have learned alot about my disease and it's nice to talk to someone else that has the same thing or just voice how i'm feeling at the moment, it has made me sit back and really think about how long i've been short of breath and it has been a very long time now for at least 16 years now and has done nothing but get worse, all those years of being SOB i've tried to get doctors to look further than my lungs being there is heart disease in my family, but that's life i guess and i believe things happen for a reason in life, and i'm now making decissions that are right for me, i decided i have to have something done, that is right for me, i've been taking meds and they have been pacing me for about a year and i'm still getting worse, the dr. feels that i'm not following the normal pattern he says usually the meds work and after having me on one of the better calcium channel blocker at the max dose for a while now, it hasn't done what he wanted it to do, I take 360 mg of Diltiazem, and he also feels the pacer has done all it's going to do, he feels being i've had so many people in my family that has died from the disease, he feels i should have the surgery, he also said he did not want to put me on a combination of drugs with me living so far and he couldn't monitor me like he wants too, it makes sence to me, like i said I trust Dr. Gilligan to make the right choice for me, i don't even know if i can have the surgery that's why i'm going into the hospital to see, but questions people have on their disease should be answered by their doctor someone qualified , like i said this is a wonderful site to come to, so we don't feel we are going through this alone a very serious disease, I wish everyone the best and keep your fingers crossed for me that i will have the best option for me

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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    • #3
      Re: Sharing Med Info

      Shirley, I'll cross my fingers and say a few prayers. My message wasn't directed at anyone in particular. The sharing and support given on this board is incredible! It's helped me keep things in perspective many times. Comparing isn't always bad either, but we just aren't all at the same starting line. Most of us don't even know where or when the start was. I've often said playing the game would be much easier if I just knew all the rules. Anyway, we all need a doctor we can trust and he needs to be able to trust us to come to him, and then work together. The help we give one another here will hopefully make the doctor's work easier because we'll all be better prepared for checkups, etc. Hang in there, Shirley, and keep us posted. You've got a great doctor. Linda

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      • #4
        Re: Sharing Med Info

        I know you were not pointing your fingers at anyone i value everyone opinion on here, i think we are lucky to have such a board like this to come to, i wish this was around when my brother was alive he would have really enjoyed this board, he knew no one that had it, that is one thing that has changed a little because of this board, I do not feel i'm alone with it and if it wasn't for this board i would have never thought i wasn't getting the right treatment from my first cardio doc and i'm very thankful for you and Lisa giving me Dr. Gilligans name and hopefully he will find something that will relieve these symptoms, he thinks it's going to have to be surgery but we'll see

        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment

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