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Lori Henry Find out more about Lori Henry
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  • New to the Board-Quick Questions & Comments!

    I just found this board today after simply typing in IHSS on the search site. I just wanted to say thank you so much for this site, I have just spent 2+ hours searching and have learned so much already.
    I was diagnosed with IHSS (I am so behind that I still call it that) when I was 15 (I am now 25) after I fainted at Basketball practice. I have since been on 50mg of Atenolol a day and have had very few problems. I inherited this from my father (they diagnosed his problem the same time as mine). He played college football and has been very active even since the diagnosis. I have one brother, who has not been diagnosed with anything and also currently plays college football.
    I just had an echo test after not having one in 3+ years. They told me that my HCM lies very low in my heart and way below the normal pattern of growth (which was good news to hear). They said that my father most likely has the same pattern of growth which is why he has been able to be so active. They also found an abnormal blood flow, in which my blood flows through the atrium (is that the right word?) before pumping through the heart. This also did not worry them because they said plenty of blood was still going through my heart.
    Long story short, just wanted to know if others have this "low growth" and if that is a "better" form of HCM. I have been married for 3 years and we are talking about children. I would love to have kids, but am not willing to make dangerous risks. Any input would be appreciated! Also wanted to give encouragement to those who have recently found out they have HCM; I have lead a full and happy life and have not been stopped from doing anything (except marathons, but didn't have much interest in that anyway). Thanks so much!

    Lori

  • #2
    Re: New to the Board-Quick Questions & Comments!

    Dear Lori,

    Hi..welcome. I just wanted to say that I am a 38 year old woman, and I have an 18 mo. old son. I had an extremely normal pregnancy and a basically normal delivery.

    You should be aware that your children do have a 50% chance of getting HCM, so you should be aware of the risk, and make sure to have them screened, if you choose to have kids.

    It is possible to have a normal pregnancy and delivery with HCM, although there is some issue as to whether it is safe to have an epidural at the time of delivery. You should consult with a cardiologist in advance of getting pregnant, and be followed throughout both by the cardiologist and a high risk pregnancy doctor. Otherwise, you should be fine.

    Just for the record, I did choose to have an epidural and it was fine during the delivery, but I did faint afterward from low blood pressure, so....make sure you know your options ahead of time.

    Good luck.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Re: New to the Board-Quick Questions & Comments!

      Thanks for the advice, I just learned today through this board about the epidural. I appreciate it and will keep you updated. I love hearing stories about successful pregnancies with HCM. I have an appointment with a cardiologist next month and then a high-risk OB, so let the fun begin!
      Have a great weekend.

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      • #4
        Re: New to the Board-Quick Questions & Comments!

        Lori, welcome! You might find it helpful to call Lisa in the HCMA office before your appt next month. You will find her to be very informative and you will most likely be better prepared with questions for your doctor. Lisa can speak from first hand experience about pregnancy and delivery, also about raising a beautiful daughter. You have already gotten some very good info and I am sure you will hear from others about their experiences. Best wishes to you! Linda

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        • #5
          Re: New to the Board-Quick Questions & Comments!

          Lori, this is my fiorst day here as well. I was also about your age when I was diagnosed with HCM, 25 to be exact. My case is different because while I do not have any obstructions I have had several symptoms over the past five years. Despite some recent struggles I have been pretty healthy and let a relatively normal life since being diagnosed. Eventhough you have a relatively mild case and surely no obstruction. Make sure you havea local cardiologist and have an echo on a yearly basis.

          As far as children go...My fiance and I have talked about this and maybe I am being selfish but I feel that awareness is the most important thing. Again, not to sound selfish, bt I would hate to see you deprive yourself and your husband such a wonderful experience due to such a treatable condition. You should consult a genetic counselor however before you decide to try and have a family. Good luck.

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          • #6
            Re: New to the Board-Quick Questions & Comments!

            Lori -Welcome..you have one of my favorite names...as it was my sisters,

            Call the office and we can chat a little and get you set up with some names of specialists that may be needed in the future...and to talk about the pregnancy issue in detail - -base information - PREGNANCY IN HCM IS well tolorated in MOST! - -

            Apical HCM is what you have explained - that is the lower part of the heart where it appears your thickening has occured. There is not a clear cut difference in disease outcome based on where in the heart the thickening is....although there does appear to be a lower risk of sudden death.

            Call the office and we can talk about your HCM (lets trash that IHSS thing )

            Be well,
            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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