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Importance of a Specialist

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r2Godsgirl Find out more about r2Godsgirl
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  • Importance of a Specialist

    Hey everyone

    My name is Lori from Cedar Rapids and I first wrote in October 2002.

    I have been reading the posts off and on. I gained much information from everyone.

    THANX!!!!!

    I just got back from the Mayo Clinic and had a great experience (dispite all the running around) for a hospital. Everyone was kind, compassionate and informative. There was only one person that was unfavorable.

    WOW, what a relief. I learned so much.

    I would just like to tell you, if you are at this site for the first time how important it is to have a HCM specialist advise you. I wish I hadn't waited so long!!!!!

    I read much of the information at this site about the importance of a HCM specialist opinion.

    I also read about the symptoms, limitations and everyday struggles. Even though I was having these same struggles etc. I didn't realize how sick I was and I wasn't real sure how important a specialist is.

    Even though I had a great cardiolist he didn't know near as much about HCM as the people at Mayo.

    I found out in Oct. that I have HCM and had an ICD unit placed. I was and told to see if medication would work and given Toprol XL 50 MG a day and it worked for about 3 weeks. I started having symptoms again and the Toprol XL was increased. Again, it worked for a while and sympotms came back, the fatigue was worse and I was getting tightness in my left arm. My medication was again increased and this time no results. I could not go a half a block without feeling faint or like someone was sqeezing my heart and left arm off. Finally after 5 months I was referred to the Mayo.

    I was seen by Dr. Bernard Gersh and then went to all the other tests; Blood work, (I participated in the genetic testing which was four extra tubes of blood well given!!!!!) echos, xrays, treadmills, and ekgs. "He referred me to Dr. Hartzel Shaff for surgery.

    Come to find out 37mm is quite large for the muscle thickness.

    I will be having open heart surgery April 9th. I am relieved, excited, apprehensive and scared.

    Dr. Shaff said my heart will be better after surgery than it is now. Most of my discomfort will be from the incision and stuff.

    Any suggestions for preparing myself physicaly for the surgery.

  • #2
    I'm glad you had such a good experience. I will be thinking of you and your upcoming surgery. Take care of yourself in the meantime.

    Reenie
    Reenie

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

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    • #3
      wow

      Wow! 37 mm is HUGE!! I'm so glad you are getting a myectomy.

      Do a search for "myectomy" (search link is up top) and you will get lots and lots of info about them.

      The Mayo's site is also great and they should be prepping you well, too.

      Try and stay as calm as possible. Make sure you have a good support system set up for your recovery and take good care of yourself --no getting a cold before surgery!

      and keep us posted,

      Sarah

      (I've been in-patient at Mayo-St. Mary's and they ROCK! )

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      • #4
        I can not tell you how happy I am that your on the path to quality treatment. You have stated so well why an HCM specialist is important.
        YOUR quality of life is the MOST important thing!! You are on the road to gaining a better quality of life, I am so happy!!

        Others who have had a myectomy are here on this board and will share with you any information you need. The team at Mayo is very good and you are in good hands!

        Best wishes,
        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)

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        • #5
          I know my post was lengthy but hopefully it will encourage those that are skeptical of the importance of a specialist to seek one.

          Thank you for all your encouragement.

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          • #6
            Lori,

            You summed it up quite well. My HCM specialist improved my condition 1000% in a month and a half, while my normal cardiologist was still treating me after 2 years.

            As far as surgery prep, not so much physical as it is mental. Positive attitude, know your doing the right thing, remember that fear is normal.

            Best of luck to you, keep in touch.

            Bob
            Cleveland Myectomy Crew
            Member since November 2002

            \"Chance favors the prepared mind!\"

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            • #7
              Hi Lori,

              I am happy that you finally found a doctor who truly understands the disease, the symptoms and the treatment possibilities. It's wonderful that you didn't wait any longer!!

              I wish you well. Fill us in when you can!!

              Take care,

              Karen

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