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What do we do????

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christine_1124 Find out more about christine_1124
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  • What do we do????

    Hi, my husband was recently diagnosed with hypertrophic obstructive cardiomyopathy. He is 21 and I am 19. When we were told that he had this condition, the cardiologist seemed really concerned and from the way we took it, he needed to have surgery soon. He said that his valve was heavily leaking and if the valve wasnt repaired, that it could wear out the heart to the point where trying to fixing it wouldnt help and that if that happened the only resort would be a transplant. He said that the valve leaking was a result of the blockage from the growth as a result of this condition. Needless to say he really scared us, and made me personally feel like I was going to lose my husband of 8 months. So he said that he would talk to the head surgeons and tell them about him and then they would discuss it and decide what needs to be done. So, we waited.. and waited and finally, my mom called them yesterday. The surgeon said that they had discussed it and that it would just as much of a risk for them to go in and try to fix it as it would be for him to just go on with it?!?! They said that it would be best to wait until he was in a worse condition??? From what we understood surgery was a must, and from what I have read on here, it seems to be a pretty common thing?? We're now all extremely confused as to whats going on and why they are telling us 2 different things? If he doesnt get that valve fixed wont it wear out his heart??? How long can it go without being fixed? Im really worried now. I had finally gotten used to the fact that he was going to have to have surgery, and that it would help him, but now I dont know what to think? Im afraid that something will happen to him. Anyone have this same situation????

  • #2
    Re: What do we do????

    Hi there and welcome. You've come to the right place to get answers. There are options. Please call Lisa at 973-983-7429 and she can help you find a doctor who can help your husband. If his mitral valve is leaking heavily due to the obstruction, there are more options than a heart transplant. It all depends on the severity of the damage to the valve. Surgery is not as risky as having such an obstruction IF you go to the right doctor. There isn't an HCM specialist in Oklahoma that I'm aware of. He really, really needs to see a specialist.

    Just to ease your mind a bit, even if his mitral valve is damaged beyond repair, they can replace just the valve. There are a lot of people in this world who have artificial valves and do just fine. Feel free to post any questions you have any time on this board. We will help you the best we can.

    Reenie
    Reenie

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

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    • #3
      Re: What do we do????

      You are in the right place...on the web at least.

      It is highly recommended that you seek an opinion from a specialist in HCM. There are several - see our links page for starters. I will be in the Office on Tuesday - feel free to call me then.

      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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      • #4
        Re: What do we do????

        Dear Christine,

        Many people are in your shoes when they get diagnosed by a local doctor who is just not familiar with HCM enough to have good answers for you.

        It really is necessary to see an HCM specialist so hubby can get evaluated properly. Obviously, heart surgery is a risky thing to do, but when done by doctors who do them all the time, the risk factors go way down, unless there is some other health condition that makes the entire prospect of surgery a problem. But your hubby is young and you don't mention anything, so I'm guessing they are just not qualified to do the surgery over there.

        Think of it this way: do you want a doctor whos says, "oh, neat! I never get to see this disease." or one who says, "oh, yeah, I see this every day."?

        So buckle up and call Lisa to talk about where to go and how to go about it.

        You should also so that the vast majority of HCMers live a FULL life span.

        take care,

        S

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