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Bert Find out more about Bert
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  • It's been a little more than a week...

    since we found out about Jonathan's condition. I feel that due to Lisa's help we've made great headway but needless to say my wife and I struggle immensely. Jonathan has been ok, but I do notice a couple of mood swings in the last couple of days. I figured this forum would be a good place to vent a little and perhaps provide us with some hints as to what to say and how to handle things. We explained to him what we had set up for him at the New England Med Center in Boston and he's hoping that his luck will change. From what I've gathered from reading just about every single post on this website, a misdiagnosis has never happened.

    Have a good weekend all.

  • #2
    Bert, I know this is such a difficult time for all of you. My son was diagnosed at age 7. He is now a 19 yr old college student. Every time we have ever had a big checkup planned, the few days before become stressful. The anticipation is unbelievable. Regardless of the outcome of the visit, there is always a little bit of a feeling of letdown. We're all hoping to hear that we are "cured", even though we know better. Nobody really wants "treatment", we all want "cured", as unrealistic as that may be. I learned to accept that our son needed a little extra understanding and space before these checkups, and the freedom to "just be mad" about it. Whatever gets you thru! I know I experience a little of the same anticipation(well, maybe a lot) also, and I learned a long time ago that it's better to accept some feelings than to try to change them. Things get back to normal, whatever that is, when the pressure of the big day is over. Just keep telling yourself how fortunate we all are to have come so far, have these specialty centers with the present advances, and keep looking to the future. Someday, we'll have those pigs flying. We're thinking of you all, and wishing you the best. I'm sure we will get some coping tips from some others also, they would certainly be welcomed! Linda

    Comment


    • #3
      Yes - it is possible for a misdiagnosis - but I would not be counting on that.
      How to cope with the new reality of your lives - there is no right answer but I can tell you this you will move through different periods of adjustment , much like those we deal with when we have suffered a death in the family. Is the diagnosis equal the same as a death - in some ways it is - you have lost something and there is no way to regain it again - HOWEVER there is life to be lived and much that CAN be done regardless of the diagnosis. You will all need to move through the stages of grief and at the end of the process - you will see the sun will shine again. Some people move quickly others not so quickly through this process - but it will come in time.
      You - your wife - your family and yes your son will all feel some or all of these as you move through the process. Knowing that it is "normal" may make it easier for each of you to deal with.

      Immediate Reactions—The first few weeks following diagnosis
      [u]Emotional
      Shock
      Relief

      Physical
      Chest pains
      Lack of energy
      Headaches
      Fatigue
      Vulnerability to illness
      Tension


      Behavioral

      Over-reactive
      Hyper-sensitive
      Running
      Sleeplessness
      Isolation
      Need to relive diagnosis


      Later Reactions—After the shock wears off, you begin to feel your feelings once again

      Emotional

      Anger
      Fear
      Guilt
      Panic
      Loneliness
      Depression


      Physical

      Chest pains
      Lack of energy
      Headaches
      Fatigue
      Vulnerability to illness
      Tension

      Behavioral
      Over-reactive
      Hyper-sensitive
      Running
      Sleeplessness
      Isolation
      Need to relive diagnosis


      Adjustment—A time when you think you are going to "make it"
      Emotional
      Taking responsibility
      Reconstructing your life


      Physical

      Looking forward
      Doing things for oneself

      Behavioral
      Exploring new interests
      Personal growth
      [/b]
      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)

      Comment


      • #4
        It's been a little over 2 weeks for us...

        And we've received the results to Kollin's EKG monitoring. It seems that other then his heart working double time the flow was good. So that is a HUGE relief for the time being.
        Bert~ my son was recently diagnosed as well however he is only 4. An active 4 though. His whole room is decorated in all kinds of sports stuff most of which he,like your son , may never be able to play. Time to redecorate I suppose!!!I can not imagine what your family is feeling with him being such an avid hockey player. I wish you the best as does everyone else on this boardI am sure!!!

        Lisa,
        Kollin is taking his medicine (inderal 2ml 2x a day) very well. He says it burns? I assume he means sour tasting. Anybody taken this and know what he means? It is hard for him to communicate with me about it with him being only 4. He is a very bright 4 but obvioulsy it is harder for him to say "hey mom this medicine burns as it goes down my throat" But like I said he does take it very well he just gets a little sip of water afterwards and is on his way. No complaints so I guess I couldn't ask for better then that. Anyway, I was reading the list of feelings and reactions you had posted. It seems like I am bouncing back and forth between a few and I am sure I will be that way for awhile. I will say this though. It is very hard to not let him play just as wide open as little boys his age can. I've been very good (at least I think so ) about explaining that if he starts to feel tired or not very good then he needs a rest. And I make sure that he is well hydrated. Then I try to give him his space and let him be his little Kollinator (his nickname like terminator)self. This weekend here in Alabama was very nice and warm and he spent most of it playing outside. He loves to ride his bike with his step sister and wrestle around with the two little boys next door. It is hard to be outside watching and not say " Hey kiddo you gotta calm down" I want him to be able to play and be his "normal" lil self. It is very hard for me right now to adjust to the fact that he is his "normal" lil self as far as he is concerned. To me he is still himself too but when he starts playing hard and riding his bike I immediately begin to worry. I hope this doesn't sound silly to you guys because I see what y'all have been through and have lived with for such a long time. I KNOW that he will most likely live a normal lifespan. It is the not knowing for sure that kills me. I know that bike riding is one of the things the doctor said he could do but I still freak out a little bit. I keep it to myself or share it with his stepfather so it doesn't affect him. He understands his heart is "special" the doc told him sick but I think it is easier for him if we say special. He knows it is "too strong because his muscle is so thick" So that much he does understand. Now if we can just get his mommy to accepting it the way he has. My husband is super supportive and lets me vent and cry and just be mad if it makes me feel better. I couldn't ask for anybody better. He himself was shocked when we found out and he is really supportive of the fact that I have you guys to talk to . He was telling his boss about it the other day. How great this site is. And it is!! And I am so glad that people like myself and Bert and all these others have someplace to go where people really do understand what you are talking about. Thanks guys, I've babbled enough. Those emotions took hold. Take care and I'll be in touch soon.
        Good friends are good for your health.
        --Irwin Sarason

        Comment


        • #5
          With a 4 year old it is hard to set limits on play...and your never going to win... you must watch and look for signs and teach him what they are - ie he starts breathing heavy or if the other kids begin to far out run him and he is in the back attempting to keep up...then it is time for a diversion - -
          BUT a 4 year old needs to run and play.... and he will even if you say no. My point is there is only so much you can do with the little ones they must play to grow - just watch for signs of distress..and hydrate hydrate hydrate!!!
          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)

          Comment


          • #6
            Bert

            I Have been coming to this sit as a referance long before my husband started coming. I came because my daughter was diagnosed with HCM when she was 16. She was very involved in sports dance and doing musicals. When she was diagnosed my husband and I were heart broken . She was very angry and she was at times mean and rude to my husband. When ever we had a checkup after the appointment all the anger would start up again. Sometimes, as a parent we can't say or do anythink right. Given time love and support it finaly becomes OK. She is now 22 years old well adjusted working on her masters and because of her experience with health care can and has for years been able to talk inteligently about her heart and any othe r health issues. She is also very confident in the decisions she make. I am sure you will be able to get there just keep praying.

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