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Two week roller coaster - Da Cat's Story


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  • Two week roller coaster - Da Cat's Story

    A little less than two weeks ago, when I was in the middle of an anxious search for information, I came across a link. But the website wasn’t operational. But it did allow me to request information, which produced an email to me, which led to my speaking to Lisa.
    This conversation turned around my tension filled focus (even if she says she’s a Mets fan).
    Forgive me, but I never wanted to join this club, but here I am none the less. Me and my septum, my mitral valve regurgitation, and a renewed sense of my own mortality.
    Oh well, I have 70 bottles of wine in my collection so I better grab one of the good ones every now and then.
    So, it looks like the price of admission is to put my story down.
    I’m not 100% sure where it begins. One thing I’ve known since I was a teenager (I’m 45 now) is that I have always be sensitive to going into shock. Usually this is preceded by an injury of some sort. I would begin to have pain, then start feeling sweaty, and the next thing you know, I would pass out. About six years ago, I pulled my hamstring playing softball, and 2 minutes later I was in La La land. However, I had a similar injury last year with my quadriceps and nothing happened. But I have also been known to come real close to passing out when the person who draws blood takes there sweet time finding the vein or has to do multiple pokes. Truly, I’m not real sure if this sensitivity has anything to do with HOCM.
    This journey probably begins with a bout of bronchitis about 3 years ago. I had a real hard coughing fit and passed out. Scared the **** out of the wife who sent me off to my GP (who we’ve nicknamed Dr. Duh). However, he did refer me to a cardiologist. An EKG, Echo, and Stress test later, and I was diagnosed with HCM. At this point I had zero symptoms.
    This Doctor gave me the option of doing nothing which I gladly took. All that seemed to be required was to tone down my exercise, and to check in with him once or twice a year. I used to live in California between 95-97, and back then I had been a real gym rat. 3-4 hour workouts 4 times a week. But now I was married, with a baby, so the time seemed right to get a little lazy.
    This cardiologist then made a business decision to no longer except my health insurance. When my second follow up appointment was coming, I had to find a new cardiologist. I immediately was very impressed with her. She not only seemed more knowledgeable about my condition, she has a much easier manner which exuded confidence. She explained HCM in a much more detailed manner and convinced me to get on some medication. We began with Toprol combined with Lipitor. Still, I had no symptoms.
    The next phase of my condition began with a two night birthday trip for my wife to a country cabin. I forgot to bring my pills. This was early summer 02. I became exhausted. However my condition did not get any better once I got home to the pills. For several weeks I stayed tired and I also experience palpitations, along with some tightness in my upper chest. I had my cardiologist do another stress test. It actually came back fine. She then suggested that I get a sleep study done to see if I had sleep apnea.
    She also changed my medication to verapramil. She said in case I had sleep apnea, this drug would be better for getting more oxygen into my system. Slowly the symptoms waned, but I had the sleep study and I had moderate sleep apnea with 25 interruptions per hour.
    I had been told that I had huge tonsils, so I leaned toward a surgical solution. The ENT that I was referred to agreed.
    Last February, I had a UPPP performed. My tonsils were removed along with my uvula and part of my soft palate. Over time I began to feel better. I even had a business trip in which I worked 13 hour days for an entire week, something that would have been impossible just a few months earlier. A second sleep study revealed I had only 2 interuptions an hour. The sleep apnea was gone.
    Then, this Labor Day the symptoms returned. I just felt lousy. Back to the cardiologist I went. When the 24 hour monitor looked good, I actual began to believe that maybe I had something else. But the echo came back with bad news. So she had me do a Cardiac catheterization.
    She then forwarded my tests to the head of Cardiology at Emory (who has trained under Spencer and does the bulk of the Atlanta Septal Ablations) and another surgeon who does Myectomys. She upgraded my condition to HOCM and felt that I needed surgery of some kind, case closed.
    That was two Fridays ago, which is when the research began in earnest.
    Mostly thanks to Lisa, I have learned so much more about this illness. Upon her suggestion and my insistence, my test results are heading up to the Mayo Clinic for a much needed second opinion. And I think that I probably need to do the full day of testing at one of the big HOCM three.
    I have since heard back from the Emory Physician. He actually agreed with Lisa that a second Echo was needed and he wanted his office to do it. We’re waiting on all the referrals to kick in so we can schedule it. However, he didn’t think that my condition was going to merit surgery.
    I still feel that my cardiologist is an excellent doctor, but I’m now aware that your average EKG, blockage, bypass, stent, watch your salt, watch your bad cholesterol cardiologist just does not have the needed knowledge to properly treat this disease.
    So I guess that my near future will be trying different medications until I hopefully can get rid of some or all of these symptoms. And I find that I am less anxious should I need a procedure, as long as it is with doctors who really know this disorder.
    I probably will need to change cardiologists, just because if I have to report regularly for monitoring, it should be with someone who understands this. I just wonder if there is anyone like that in the Atlanta area.
    OK, that’s my story. I’ll probably post some questions later on.

  • #2
    Re: Two week roller coaster - Da Cat's Story

    You are a good story teller! You have a nice way of telling a story that is not all that fun... but I think your attitude is great at this point!

    I leave for Atlanta myself in a few hours so I am off to sleep!
    Welcome to the board and I am very glad we spoke and that you are off on the path to quality, informed care.

    Be well,
    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)


    • #3
      Re: Two week roller coaster - Da Cat's Story

      When do you speak?


      • #4
        Re: Two week roller coaster - Da Cat's Story

        Welcome, FX! Glad to see you've found a place for some good answers. I hope you continue to share with us. I loved reading your story. Remember, you're not alone. You've already got a good start with your knowledge-seeking. We're here if we can answer any of your questions.


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


        • #5
          Re: Two week roller coaster - Da Cat's Story

          Hey Felix,

          Welcome to the club, if that's the appropriate response. I'd rather not be here myself, but then again i guess everybody here wishes they didn't have to be here. I have to admit i skipped pretty lightly through your story, but i think i caught the highlights. Doctors and specialists are important, but i have yet to meet one that knew more about my body than i do, so a lot of my time has been spent educating doctors, rather than vice versa. You sound like you have a pretty good grip on your situation... hope things get better for you soon.

          "Some days you're the dog... some days you're the hydrant."