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" COMFORT ZONE "

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  • " COMFORT ZONE "

    Okay I first have to say that I have finally reached a comfort zone with this board. It took a few days, but after reading many posts, I know I'm not alone. To explain just a bit, my dad passed June 1, 1999, which is also my husbands birthday. He passed from congestive heart failure. After being diagnosed myself, I found out that he had heart problems since birth, and my uncle also had a pacer put in. Reality hit me when I had my pacer/defib put in, and I can't get any help from my mom to get the information on my dads entire medical history. I feel the need for that info to comfort myself and also because I now know that it is possible for my duaghter to develop problems also. I have now acknowledged my biggest problem. I have always managed to keep a fair amount of control over my life up until last July ( when I was diagnosed). Since we are military, we arent close to family, but, my husband and his family has continued to be my support group. I think my mother can't deal simply because of reasons I stated above. So they help alot. So that to me seems like small loss of control having to depend on others. The major part is now that I know my health isnt excellent, I know that Im not invincable. Truth be told, death never scared me until now. Hence, I dint have control and feel at times I lose motivation. Here is what I am requesting, words of wisdom and ways that you or family delt with HCM, if you ever felt this way and how it was delt with Lana
    Lana

  • #2
    Re: " COMFORT ZONE "

    My words of wisdom to you are that you are aware of the problem, so monitor your children. My husband had HOCM and we have virtually no information on his dad's side, but think that is the side of the family it is from. I have two sons--they get echos on a regular basis. You have to use the knowledge you have to make the most informed decisions you can about your health and the health of your daughter. Don't rely on family to provide you history. Go with what you have. Seek competent medical advice and monitor yourself and your daughter. Do it regularly, and be thankful that you are aware of the condition so you can do your best to help your daughter. And, take care of yourself so that your daughter can have you around for a long time. Stay informed, ask questions, and take your health into your own hands.

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    • #3
      Re: " COMFORT ZONE "

      Good morning,

      I'm reading your post as i'm running out the door. I'll PM you when I get back in and let you know how we deal with hcm as a family as well as how we deny hcm as a family.

      There are some wonderful people on this board willing to share their thoughts as well as their support in your hcm journey. Many of them should be returning from the annual meeting sometime this afternoon.

      Take care. Talk to you later.

      Karen

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      • #4
        Re: " COMFORT ZONE "

        Lana, I suspect you've already learned that dealing with HCM is different everyday. Some days, you can face it head-on and others, denial is the best thing for the day - as long as you are not taking any unnecessary risks. We're just stronger some days than others. Reenie will be a great resource for you as far as the military lifestyle goes. She will likely be checking in tonite or tomorrow. You've already gotten some good input from Roxann and a promise from Karen. You will hear from many others. When you are ready, call Lisa in the HCMA office. Give her a few days to regroup after the fantastic conference she put together this wkend. She will be able to help you sort thru the info you have already collected and provide even more. I'm sorry to hear about your father. It must be very difficult for your Mom, knowing you have problems, and you are not able to be near her for her to help you, or you to help her thru these tough days. I'm glad your husband's family is so supportive. Don't be afraid to lean on them, you will be able to return the favor to someone else in their time of need. Glad you found us, welcome. Linda

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        • #5
          Re: " COMFORT ZONE "

          Good morning Lana,

          I'm sorry I couldn't get back to you sooner. I was planning on PMing you but the PM tab below your message wasn't there this morning. I'm sorry about your dad, June must be exceptionally hard for you.

          I understand your desire to know more about your dad's health. I wish we had our past medical history documented. We tried to get my father in laws medical records, but couldn't - he died in the late 1960's. Unfortunately, my mother in law is useless when it comes to medical information - it's all blocked out. We are keeping wonderful records for our childrens future though. Lana, your dad died recently....try to contact his cardiologist. Bypass your mom and see what you can get accomplished. With this new privacy act you'll probably need her signature on something, but maybe that won't be a problem. Is anyone else affected with the disease in your family?

          I'll give you some background on our family. My husband, Roy, was diagnosed at 16, our 20 year old daughter was diagnosed last year and our 17 year old son was diagnosed 4 months ago. (2) of Roy's first cousins and one of their children have the disease. My father in law died at 40 and (4) of his siblings died in their 40's, 50's and his aunt at 60. That's our family history and here's how I accept it all...

          Usually, I deal pretty well with HCM - especially when things are going well! I know it's there, I'm aware that anything can happen, but I am strong and feel positive. But, when my family is struggling with symptoms, admissions or just plain trying to cope with the disease...it's another story . I struggle along with them and when my children are finding it difficult... it's exceptionally hard for me. I have to work diligently at staying positive, but it can be exhausting. I pray alot. I search for information. I talk to others. I've learned to share my feelings with others. For years I kept everything inside. It's easier now since I've accepted help from others & learned to share my feelings with those outside the family. It's too hard to walk this alone. HCM is difficult to deal with and live with at times. I try very hard to step back and look at the big picture because the small picture (sudden death) can be frightening. I have to remind myself that life is short and we've been blessed. There are others out there who have suffered more. I remind myself that we're ok and that this difficult time will pass - it could be much worse. Life is one big gamble, but you must live it. Can't let the sudden death part stop you from living. What has changed in your life that makes death more of an issue? Why is death more scary now? I feel that too sometimes, but usually it stems from a change in health or something else.

          Your mom sounds like my mom in law. My husband lived in denial all his young life - it was all he's even known. The disease was never discussed. It was actually referred to as the family curse. My mother in law continues to live in denial. She actually doesn't know anything about the disease that claimed her young husband, disabled her son and is now affecting her grandchildren, but that's ok. I couldn't live that way and she can't live our way. Reality is too much for her - it may be that way for your mom also. They are not strong enough, unfortunately. Sometimes it gets me crazy, but what are you going to do!?!?

          Thank God for your husbands family. Talk to them and lean on them when needed. Use this message board, email me & others, get information and cry when you need to. Try to lighten your load somehow and fight to get that control back. It's ok to lose your motivation intermittently, we all do. Usually I'm strong and in control, but I can crumble. I allow myself a couple days to wallow in my sadness or fear then I have to pick myself up & carry on with life before it becomes dysfunctional.

          Talk to you later,

          Karen

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          • #6
            Re: " COMFORT ZONE "

            Hi Lana,

            I was reading your story and wanted to offer you some comfort. There are a lot of people here who know exactly what you are going through. I wanted to add some to the military standpoint. Where are you at? I might be able to help you with some information on how to go about getting referred to a specialist. My husband is active duty Air Force. He has HCM and an implanted defibrillator. He's had it for almost 3 years and they have actually kept him in service, much to our surprise. I can also give you some information on getting your daughter tested. Please let me know if there is anything I can do for you. If I take a while to get back with you, please be patient. I'm moving this weekend and the movers come on Friday so I'll be without my computer for a week or two, then don't know how long it will be before I can get connected back to the internet. Don't get overwhelmed. Take it slow and learn. Knowledge truly is power.

            Reenie
            Reenie

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

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            • #7
              Re: " COMFORT ZONE "

              Welcome to the board. I am sure you can see by other posts why it has taken me a while to respond.
              Re your dads medical records - you can ask YOUR doctor to contact HIS doctor to discuss the situation, that may be all you need to get ample information to see how your dads health may have an affect on yours.

              Education of family members is important and is something we know is a hard thing to do. We offer some information that we can send directly to your family members to help the understand HCM better and in turn they tend to be more supportive of YOU...once they understand the condition.

              Be well and know we are here for you.
              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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