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Another first timer - Some ramdom thoughts

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swinand Find out more about swinand
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  • Another first timer - Some ramdom thoughts

    Hello all, I have been a member for a couple of months now reading posts and comparing my situation to what I can gather from others. In a sense it is comforting to know there are others who are dealing or have dealt with very similar issues and concerns. For the longest time I felt isolated in my situation. I did alot of my own research trying to to find out what I could. My readings here have not only validated what I have learned, but enhanced that knowledge with not only new learnings, but real examples and first hand experience of others in the same position.
    I was diagnosed about four years ago at the age of 48. I read with interest the posts regarding life insurance. It was an application for additional insurance coverage that really uncovered my situation. I had to have a physical and my EKG came back with some disturbing results. My insurance application was denied and I went my family Dr. and ended with a visit to the cardiologist. The rest is history. For a while I just thought I was just a little out of shape due to SOB on some exertion and reduced stamina.
    I was diagnosed with concentric HCM and put on Atenolol. At 100mg/day I was just about comatose. I couldn't stay awake or function. I have been on 600mg/day of Verapamil for two yrs and feel somewhat better. I still tire easily, a combination of the meds and the disease. Sometimes my mental alertness is less than I felt it was in the past, but my Dr. assures me it is the reduced blood flow to the brain caused by my obstruction, my meds, or both contributing to that. My stats read: Ejection fraction 75%, (not bad) pressure gradient 55mm/Hg, I don't know what my Septum measures,(after reading here that is definitely a question I need to get answered). I have a "mild" mitral regurgitation, and most recently my left atrium has begun to dialate. I have occaisional palpitations and some spells of light headedness for short periods, and get SOB frequently. My feet and legs swell and have night sweats. All in all it could be alot worse. My cardiologist has recommended that we begin investigating surgical options. That means a septal myectomy to me. I have put him off for a while, I had a hard time getting my head around that idea. After reading several recent success stories on the board here, I have a lot less anxiety than I did initially. My sister in law is also a cardiac nurse and have talked to her at length about some of this as well. My Dr. mentioned Cleveland and Houston as potential sites. I have read and heard nothing but fine things about Cleveland, and almost nothing about Houston. At this point Cleveland seems to be where I am leaning.
    I'm not sure what the process is get the ball rolling, my Dr.'s office sounds like they will handle it. They will send my most recent test results out to them and make arrangement for me to go there and be evaluated. After that they will prescribe a course of action and make it happen. Does this sound about right? I am not scheduled to go back to my cardiologist until Dec. at which time we will start that ball rolling.
    I also read with interest the posts on having to give up activities and family concern about driving a car. Common sense is good idea, don't overdo and be aware of your limitations. That has been a hard lesson for myself. I am physically capable of lifting, pushing, etc. but I know intellectually I should not be doing those things. I have had a passion to learn to fly most of my life. I began flying lessons in powered aircraft going as far as I could without having to have a physical to continue for licensing. I then switched to gliders which do not require a physical certification for licensing, only a self certification. Again, I was on the verge of being licensed, but I was finding I did not have the stamina for sustained flights nor could I handle the heat and physically moving the gliders to and from the flight line. I had to give that up to for the time being. Oh, and having a syncope spell in the cockpit would not be a good thing either. From a safety standpoint and personally understanding my situation I could not in good conscience certify myself as physically fit to fly.
    Anyway, I have rambled on enough for one post. As the time gets closer to my potential surgery I will surely have more questions and welcome any insights I can get from the members. Thanks for the opportunity to clear my mind here.

  • #2
    Re: Another first timer - Some ramdom thoughts

    Welcome, sounds like you have a good understanding of your situation and a great attitude to go with it.
    If you have any questions regarding your surgery ask, and it will be answered many times over.
    I am not a candidate for surgery, but always read people's posting who are and always admire the way they conduct themselves thru the whole process and a lot of that has to do with the support they receive here.
    Keep us posted.
    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
    So if you are capable of thought then you are capable of great things
    Good luck and stay well.
    Glen

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    • #3
      Re: Another first timer - Some ramdom thoughts

      Welcome. It sounds like your doctor is good at looking into all the options for you. We're glad you're here and will be glad to answer any specific questions you may have if you want. You might want to give Lisa a call, her # is posted on the bottom of this page, and talk with her. She is vvery comforting and knows so much about HCM. I'm sure that she can help you with accepting the possibility of surgery. I hope to hear more from you soon.

      Reenie
      Reenie

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

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      • #4
        Re: Another first timer - Some ramdom thoughts

        A Big WELCOME TO YOU!
        But a short note...
        I am off to the doc. to get my niece her 1st ICD...I will write more later!

        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


        • #5
          Re: Another first timer - Some ramdom thoughts

          Welcome. I'm glad you found us.

          Talking to Lisa is an experience every HCMer should have. Give the office a call and find out if it is faster to have your doctor hook you up with Cleveland or for you to call yourself.

          Be sure to talk to your insurance company about any out of network issues.

          Yes, the drugs make most of us feel a little slow and fuzzy a lot. Durned if you do and durned if you don't, really.

          By the way, you should just go to Cleveland and get evaluated. If they think you need surgery, they'll tell you. THere is also the Mayo Clinic and a couple other locations on our links page.

          take care,

          S

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          • #6
            Re: Another first timer - Some ramdom thoughts

            Things to think of when picking a specialty center...
            Where is the BEST place for YOU.
            What is the most time efficient location.
            What are you hoping to gain from your visit.

            Call the office on Tuesday and we can give you some names and numbers and you can work on finding the BEST place for YOU.

            Be well,
            Lisa
            (from Boston...although by car not Train ;-0 )
            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

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