If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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BackInSaintOlaf Find out more about BackInSaintOlaf
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  • #1

    My Story

    Hi everyone. My name is Mike, I'm 23. I lost my mother Virginia almost 3 years ago to HCM. She was 47. We didn't know about the condition until they performed an autopsy and found it. She died very suddenly in her sleep. My mother was pretty sick for a long, long time with chronic asthma (which we found out may have been exacerbated by the HCM.) She was also afflicted with severe panic & anxiety disorder which also may have had something to do with the asthma attacks/lack of oxygen to her body. These conditions pretty much left her bed-ridden for the last 10 years of her life.

    I just found this website today, and I think it's absolutely amazing. It's good to know there are resources for people and their families that this disease has crippled and attempted to destroy. Reading through all the stories on this forum makes me glad that none of us are alone in going through some of this.

    Thanks again for reading.

    Mike
    Tags: None
  • #2
    Re: My Story

    Mike, Welcome. I'm so sorry for your loss, and also for the terrible times your mother endured. Please continue to read and learn about HCM. It is important that you and other family members be screened. There is treatment, and most people live a pretty normal life. You just need to learn your limitations and needs. You might find it quite helpful to call or email the HCMA office and receive an info packet. Lisa will be happy to talk with you if you have questions. Feel free to share info or ask questions here. Linda

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    • #3
      Re: My Story

      Hi Mike. Greetings from Carthage, IL. (For everyone else, most people in Salt Lake will get the joke. ) Welcome to the HCMA. You're in a great place here for people who will understand your thoughts and your questions while you learn more about HCM. I agree with Linda, get yourself and all siblings screened. Let us know if you have any questions.

      Reenie
      Reenie

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

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      • #4
        Re: My Story

        be sure that you and all your family members stock up on health, life, and long term disability insurance before you get screened if you haven't already done either or both.

        i'm very sorry about your mom, but i'm glad you found us.

        all the best,

        s

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        • #5
          Re: My Story

          Mike,
          Welcome to the board. I am sorry to hear about your mom - I wish we knew about her diagnosis earlier, it may have helped.
          Have you been screened yet?

          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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