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  • husband has HCMA & waiting daughters results

    Hi my name is Gail,
    My husband has HCM and our 9 year old is waiting her results we have 2 more weeks until we find out. You would think with all of the modern tech we wouldn't have to wait and go through all of this for three weeks.

    All of this just happened to us in November when my husband collapsed at work with what they thought at the time was a heart attack. He is 38 yrs old and is very fit and athletic and has never has any problems that we knew of until now. He was shocked back to life 2 times and was given CPR, by a police man who just happened to be at the street that they just passed, transfered to a Major hospital in Phila. and had a defib placed and sent home with a promise that he will be able to resume his life where he left off. NOT SO my husband is a train engineer with 2 weeks left in his training program, we just bought a new house 6 months ago and it needs allot of work that now he can not do. In the state that I live in, if you pass out due to any type of medical condition you are not allowed behind the wheel of a car for 1 year. He is not eligible for disability, workman's comp or SSI. His job does not know what to do with him since he can not finish his training. This is not where he left off with his life.

    He is having a hard time dealing with all of this and I don't blame him, but I was looking at it like he was given a second chance and that we need to make the most of it. Until they brought in genetics and now I find myself not being so upbeat as they explain that our daughter at the age of 9 may carry this and if so, so may her children. It just keeps getting better and better. I don't mean to sound bitter but, I've been the family cheerleader and now my pom-poms are tiring.

    If anyone has any good stories I would love to hear from you. I can't hear anymore from these doctors, every time they explain something to me I just get more confused and upset. I could really us some help.

    Waiting to hear from you. Gail

  • #2
    Gail,
    I live in NJ - there is no law baring him from driving. I would highly recommend a second opinion. Please call the office I can give you some names of some docs in NJ that can help - they are in Northern NJ I am assuming you are in South NJ so it may be a bit of a drive but well worth the time.

    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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    • #3
      Hi Gail. You are among friends here at the HCMA. Please feel free to vent any time you need to. Give Lisa a call. She can help in a lot of ways. 973-983-7429

      Reenie
      Reenie

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

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      • #4
        My husband was diagnosed at the age of 36 and my 11 year old son was just diagnosed a month ago. My ex-husband (now we are divorced) now is 42. My 10 year old daughter is tested every year.

        I know right now everything seems so overwhelming. I remember when Carlton (ex) was diagnosed and I was so scared and had never heard of HCM or IHSS. I thought our life as we knew it was over. But we dug our heals in and learned as much as we could about the disease and did whatever was necessary for Carlton's health. After a while, things didn't seem so uncertain. I knew that now he was being treated that the chance of sudden death is much more limited. Thank goodness your husband recovered from his near death. Now with the defibulator in he as some safety that he did not have before. I know you have to be worried and scared for your husband and daughter.

        Believe it or not you still have alot to be thankful for. Just take one day at a time, learn as much as you can and find a great doctor. I will be thinking about you and your family and hope the job situation works out.

        Thinking of you!
        Janet
        My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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