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Going To Cleveland Clinic

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  • #1

    Going To Cleveland Clinic

    HI ALL,
    I'm off to cleveland clinic to see Dr. Harry Lever and I am little nervous, I have been having trouble with rapid atrail fib. it was under control until recently and I am afrail I will need surgery or something. The doctor was trying to pace me out of it here and while my atrail fib has calmed down, I have felt worst a little more chest pain.
    also my stomic cramps after taking lasix and I don't feel I move the fluids well or much at all with out the lasix and a year ago I had this kidney scare, the doctor said my test was abnormal, but when he sent me to a kidney specailist, he looked at me and said I made a mistake and sent me on my way, I didn't feel good about that and asked to see another doc. but my doc. wouldn't do that. I so scared to even talk about a kidney problem with hcm. Is it that normal to rely on meds. to pass the fluids?
    How many people out there have rapid atrail fib and how is it treated for those of you?
    Jen
    Tags: None
  • #2
    Re: Going To Cleveland Clinic

    hey kiddo!
    good luck and send my regards to Cleveland!

    let me know how you make out.

    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment

    • #3
      Re: Going To Cleveland Clinic

      Jen,

      I hope it goes well at the CC!

      You asked if anyone had rapid atrial fib - I don't have rapid atrial fib as far as I know, but I do know that for some reason that is not clear to me, Dr. Gilligan keeps bringing up the possibility that my problems might be caused by afib. Most recently he told the doc I saw here that he thought that this might be what was causing my fluid retention and that it might be occurring at night when I am unaware of it. Is this a common cause of fluid retention and chf? I have been puzzled by the number of times he has mentioned this. Since your post seems to hint at the same issue, thought I'd ask, especially since I am having a lot of fluid retention right now. I would speculate that for me the retention is directly related to doing too much, which is a problem right now since we are having 80+ students in tomorrow in groups to dye eggs and dip chocolate eggs and giving an Easter egg hunt for professor's kids on Saturday. I just made 90 rolls to rise overnight. Last night I made 100 peanut butter fillings. Mind you, I'd buy the rolls and chocolate eggs, if they could be found here. But I am kind of excited about dipping eggs! I got friends to bring me an icing bag and some points when they came for a visit, so I hope that some of the students can decorate their chocolate eggs. Many Chinese are incredibly artistic, so I can't wait to see what they come up with. One girl last year made a Chinese temple on her dyed egg!

      Rhoda

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      • #4
        Re: Going To Cleveland Clinic/ I'm back

        I'm back from cleveland clinic now.
        I didn't do so great on the stress test, my blood pressure dropped and I also had blood work and it is thought that i have hyperthyriodism/ over active thyriod and I'm so worried. I've been pitting in my shin's and I have lost about 30 lbs in 2 1/2 months and I feel bad. I have to stop my pacerone because of my thyroid, till we figure out what to do and I am worried about my atrail too now.
        QUESTION????
        if one's heart is obstructed does that mean that life will be cut short or sick all the time?
        does anyone else have thyroid problems w/hcm?

        I'm worried somethings going to happen to me and I feel very depressed and I am having real bad panick attacks too.
        Jen

        Comment

        • #5
          Re: Going To Cleveland Clinic

          Jenn, if you have obstruction, which it sure sounds like you do, then there are options. First of all there are lots of medicines that you can try to decrease the obstruction. If those don't work there is surgery to remove the obstruction. Just remember, there are things you can do.

          Reenie
          Reenie

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

          Comment

          • #6
            Re: Going To Cleveland Clinic/questions

            The reason why I am so confused is because all my docs have got me confused?
            My specialist didn't ever tell me that I have a obstuction. My heart doctor here said that he didn't understand why my specialist put me on a stress test. My specialist did a echo first before the stress test and when I came back to see him and he seen my blood pressure had dropped, he never said why for sure, the specialist just said that he thought this one med. would help and the next day when he got my results (blood work) he said he thought that it would be my thyroid and asked me some questions and that made sense, so he order more blood test to comfirm what he found.
            I really did not suffer alot from hcm until later when I started losing weight about 2-3 months ago.
            Now I have more chest pain, and my heart pounds more often and I little more tired.
            I do know that I don't have a gradient at rest anyways.
            I was confused because one doctor said I had a obstruction and then said I didn't or he didn't know.
            But if I had a obstruction would my specialist put me on the the stress test/ tred mill?
            Jen

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            • #7
              Re: Going To Cleveland Clinic

              The specialist wouldn't keep you from a stress test just because of an obstruction. It's good to know how the heart reacts to stress, within reason. If it was too dangerous for you, he wouldn't have done it. You need to know that blood pressure dropping during stress test is one of the 5 risk factors for sudden death, and that means you may want to look into getting an implanted defibrillator. I'll list the 5 factors below. It's something you might want to talk to your doctor about.

              Reenie

              RISK FACTORS (no particular order)

              1. adverse blood pressure reaction to stress test

              2. history of fainting or graying out

              3. history of ventricular tachycardia

              4. septum of >3 cm

              5. family history of early sudden death (early is before age 50)
              Reenie

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

              Comment

              • #8
                Re: Going To Cleveland Clinic

                Ya,
                Iv'e been to cleveland clinic before, I asked my specialist if I was obstructed and he said no and I already got my AICD in Jan. 2001, after my son died at 6yrs. from v-tach (sudden death). I just freaked out yesterday, my local doc. told me some things that made me worry, when I didn't need the stress. I started going to cc in 2000.
                I really wasn't real symtomatic till recently which most of my problems are being caused from my over active thyriod, the doc. said I will feel alot better after I go back to cc for treatment of my thyriod and change my meds. around alittle.
                Jen

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