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Alcohol Septal/May 20

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Clara Palmeri Find out more about Clara Palmeri
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  • Alcohol Septal/May 20

    Hi, I am new to this web site. I found it after searching for answers after being diagnosed in March. I am scheduled to have an Alcohol Septal next Thursday(5/20). I was diagnosed in March with HCM, but have had the symtoms for years. My gradient was 135 at the time of my echo in February. I have been on the medications Metoprolol for the past 2 months but there has been NO signs of improvement. After reading some of the postings here I am terrified. I feel scared of having this procedure done. I am 45 years old and I can not even walk across Wal mart without getting tired and out of breath. Should I have this done?? I want to be around for my first grandchildren, which happen to be due in September. Triplets, now I am scared for my daughter and her children, since this is genetic. I know people live a long long time on meds, but my Dr is saying that if they adjust my medication my blood pressure would go down more and then I would feel worse. Thanks for listening to me rattle on.

    Thanks
    Clara

  • #2
    Re: Alcohol Septal/May 20

    Clara, welcome to the HCMA. This is a really scary time for you. I would like to ask first where you go for treatment and where are you going for the ablation? You will need to go to a facility that has a lot of experience with the procedure with an HCM heart. You might want to call Lisa tomorrow at the phone number at the bottom of this page. She can help you find a specialist if you aren't already seeing one.

    Yes, you daughter needs to be tested. Ask the doctors if she should be tested before or after the triplets' birth. I don't know if the stress of carrying 3 babies at once will make a difference in her echo or not. She is already seeing a high-risk OB (I would guess) so she can tell him about your history and he can monitor her.

    On another note, congrats on the triplets!! I hope your daughter does well carrying them. They'll be lots of work, but worth every minute.

    Reenie
    Reenie

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

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    • #3
      Re: Alcohol Septal/May 20

      Hi, Clara,

      Nice to meet you, but regret the occasion for this meeting! Welcome to our club! Congratulations on the coming triplets. It sounds like you definitely are going to need some help, or you may be able to enjoy holding the triplets, but your daughter won't be able to enjoy them as much, if she is having to worry about you.

      I would definitely call Lisa and make sure that you have talked with one of the top docs in this area. It may be that an ablation is the best solution for you, but there may be better options.

      I know that this is a difficult time, but I hope that it will be a wonderful time for you and all your family.

      Rhoda

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      • #4
        Re: Alcohol Septal/May 20

        At this point what is most important is that you have reviewed ALL of your options and are making the best choice for YOU.

        Give me a call and we can talk - I will be in the office around 9:30 EST.

        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
          Re: Alcohol Septal/May 20

          Hi
          I guess your nervous right now. Have faith, I'm sure you will be fine. I had my ablation last month and I'm still here talking. Have you read some of the comments people have made after their ablations? They called it a miracle. Wouldn't that be nice to wake up on the 21st and say "wow, I feel great". Think positive! It's alll in the mind.
          Tammy

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          • #6
            Re: Alcohol Septal/May 20

            I will be thinking about you as you awaken with renewed hope for a more comfortable life and better living. Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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            • #7
              Re: Alcohol Septal/May 20

              Dear Group,

              thank you for the replies and the prayers regarding my procedure I had done on the 20th. Well you can see that I am alive and kicking. I did spend a week in the hospital for some other heart related problems, nothing to do with the septal, Dr's said that it went wonderful. It was very painful, but I did wake up on the 21st feeling better. I did not research it as well as I should and probally should of put it off til I did, but I had some WONDERFUL Dr's and I was just ready to feel better at any cost. It was not the Mayo Clinic and I am sure that it is still a learning in progress for all. Thanks again..

              Clara

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