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HCM is much more thence physical disease it's hurting us emotionally HELP


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  • HCM is much more thence physical disease it's hurting us emotionally HELP

    First a quick rundown : my husband age 45 diagnosed at 14 after his 16 year old brother died from hcm., 2 ICD's so far and 1 ablation after sick for a year on the couch dr didnt believe him i did however he had atrial flutters, his mom died at 60 (8 years ago) I have 4 children all genetically tested only 1 son has it diagnosed at 10 had ICD implanted he stopped sports was devastated. My son now 17 had testing done due to not feeling up to speed shortness of breath etc. Turned out puberty grew his body and his HCM which now has a thickness of 40 with left ventrical thickness as well. He had a septal myectomy because his thickness was obstructing his mitral valve from working properly in August we almost lost him but thank god he made it. Everyone or I probably should say many as you know think he's healed it just made him feel a bit better physically but emotionally this has taken a toll on all of us but especially him. We have him in therapy but I can sympathize with him but yet can't fathom the feeling he has he has tried to express the best he can. In reality he is fearful of dying My husband and i named him after his brother that died which is an unfortunate coincidence . Easier said then done to just get back to life all friends getting ready for college he can't imagine leaving home and having an episode. I'm fearful as well. Sometimes he faints or is just too tired to go to school because he has been up all night with racing thoughts. Just a month ago our nephew my brother inlaws son passed away from this disease and self medicating (my brother in law was unaware of him prior to passing) Surgery and all those drugs they gave him a jump start it took away the physical and emotional pain. i was hesitant right away but they gave him meds like clockwork. He was in and out of the hospital for months due to complications, fluid chest pain etc and all times iv dillaudid was first drug given. He's an amazing kid we have a great relationship and we are all we have.i even found a therapist right after surgery to deal with emotional side first day here's some scripts see you next week I have always been doubtful and held the drugs. I could see since day one it was an issue. I told t he therapist as well as my son that I felt he was over medicated she said he has anxiety , yeah I know so do I. But the other day he overdosed not on purpose just stupid act. He went. To a party at an unknown place all friends were scared but my son now hooked and seeking reliefnfrom HCM took something i found him choking and foaming at the mouth He is so ashamed and thankful to be here. I know it's not his fault all of this disease has just put a stop to enjoying life They send you home with nutrition guides etc how about the best therapist to recover emotionally. We go to cardio rehab with 80 and 90 year olds they look at him and say unpleasant things it never ends now his leads are bad too and due for new ICD another big choice. Does anyone know of the right wording for a therapist or group to deal with post op and hcm which will be with us forever or at least I hope. I love him soooo much and just want him to help him feel like others. No one will even give him a job because of his heart disease and I can't lie just in case. I want people to share how the emotional side is sometimes worse then the disease itself. No ne talks about it but I am I love my son I love my family I love me and I'm scared too of this disease its not just great we have a site to talk there is a bigger issue of drug and alcohol abuse in trying to cope with something so terrible lets share the dark side it's not always so easy to deal with
    Last edited by murmom; 02-23-2013, 06:41 PM.

  • #2
    Re: HCM is much more thence physical disease it's hurting us emotionally HELP

    I'm sorry you have so much to deal with and especially for all your son is going thru. You are right, the emotional toll can be even greater than the physical issues. It strikes the entire family and all those around you. I don't really have any great words of wisdom for you tonight, but I'm glad you have opened this thread. I'm sure many will share and just that will offer some help in coping, knowing that others care and have had similar experiences.

    Thinking of you all, Linda


    • #3
      Re: HCM is much more thence physical disease it's hurting us emotionally HELP

      Sorry you all have to deal with this. Just like alcoholism and drug addition is not just a personal problem, its a family problem, HCM is too. My personal philosophy is that children (for the most part) will mirror the attitude of the parents, and some kids defy all help (believe me, I know). Venting and sharing here is one way of coping.
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .


      • #4
        Re: HCM is much more thence physical disease it's hurting us emotionally HELP

        I'm very sorry for all you and your family are going through. I don't have any advice either, except to continue to stand by him. He will know you love him and it will help him through these tough times. I pray you find a good therapist and that he can heal and get to a better place.

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


        • #5
          Re: HCM is much more thence physical disease it's hurting us emotionally HELP

          Murmom, I'm glad you found this site. Yes, coping with emotional issues is sometimes harder than the physical disease itself. One great thing about this board is that most of the people here have confronted some of these issues; they can help provide a lot of support.

          Myectomy on Feb. 5, 2007.


          • #6
            Re: HCM is much more thence physical disease it's hurting us emotionally HELP

            I am so sorry you are dealing with all of this and that your son is struggling. I completely understand. For me the hardest part of recovery has been the emotional side. It's hard when no one understands how you're feeling and they all think you are "fixed". I wish I had some words of wisdom to help but I still struggle daily. You and your family will be in my prayers.
            HCM diagnosed 8/1/11
            changed to HOCM 1/23/12
            Septal Myectomy 4/5/12 at CCF
            Gene positive, no one in my immediate family is willing to be tested, including my 21 year old son


            • #7
              Re: HCM is much more thence physical disease it's hurting us emotionally HELP

              I, too, am so sorry that you and your family are going through this.

              Like everyone else, the only thing I can offer is a "shoulder" but sometimes that is all we need to get our frustrations out. Just putting our thoughts and feelings on paper (OK, a computer screen) helps in more ways than you can imagine. I have vented, "screamed" and whatnot but people here have always tried to help whether I agreed with them or not, the fact that they all tried has meant more than anything else. I am 70 years old, all alone, and if it were not for this board would never be able to say what I want and actually have people hear me - outside of my HCM doctor I really have to credit the people here for stopping me from doing things that common sense tells me I shouldn't. So feel free to vent, rant, scream or whatever makes you feel better even if only for a moment, we have all been there and understand.

              Your son is so lucky to have a mother like you and you are just as lucky to have a son like him.


              • #8
                Re: HCM is much more thence physical disease it's hurting us emotionally HELP

                I too am sorry for all your son is enduring at such a young age. Continue to seek counseling for him. Most therapists unless they are physicians cannot write prescriptions so I would make sure you find a caring one who can relate to kids anxiety issues without drugs. I would keep up the cardiac rehab he can show these older ones how it is done. Thanks for sharing and continue to come here to our site for venting, questions and education.

                Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                ICD&Pacemaker 1996
                Heart transplant March 19, 2004 @ Mayo Rochester
                Mom of Kaye.


                • #9
                  Re: HCM is much more thence physical disease it's hurting us emotionally HELP

                  Thank you everyone we or should I say he found two friends in NA one went through cancer treatment which led him to drugs he went to a meeting and is scared but hopeful I hate he has to deal with these adult issues I showed him video of the night I found him (my husbands instinct) just to show how hard its hitting us as him since he really has no memory I think and pray it hit home he is such an amazing kid I just hope he flourishes


                  • #10
                    Re: HCM is much more thence physical disease it's hurting us emotionally HELP

                    I am so sorry that you and your family are going through this. My mother has dealt with a lot with this disease and has hit rock bottom so many times, she has had many many complications. She has been near death too many times, after all three open heart surgeries she had major complications and in the middle of all the HCM problems she was also diagnosed with non hodgkins lymphoma cancer and had to go through chemotherapy. Now she is fighting a second round of endocarditis on her foreign valve with a chance she may have to go through a fourth open heart to have it replaced again. She has been so depressed since day one, since the HCM made her have to go on disability and quit her nursing job(she was a wonderful caring nurse). I ask myself all the time, why her...why us. Why someone who cared and loved for everyone around her and why does she have to suffer so much and suffer with everything she has to go through. It has effected us all esp her husband(my dad). And as you said the first thing they do when she goes into the hospital is give her dilauded, she has so much pain medication at home. At one point we feared she had an addiction to pain medication but she noticed it herself, talked to her dr. and got on methadone to get herself off the meds. But of coarse she has had many problems since then and is back on a lot of dilauded orally. I can't say anything to help you and your family feel better but I just want you to know that you are NOT alone. We are all here to listen to your story. My heart and prayers are with you right now. I know if is hard for me to watch my mom go through this and as a mother I cant imagine how it is to watch your son suffer.


                    • #11
                      Re: HCM is much more thence physical disease it's hurting us emotionally HELP

                      I also wanted to add that I believe in god, but let me tell there was a time that I was at the point I was screaming at god asking him why he would make someone suffer and then just keep suffering day after day after day and if he was real then why did he not make it stop. That it was so unfair to put a kind caring human through this and how could someone like him that could stop all of it put our family through this. I still have not been able to answer this but I still pray every day to make my mother stop suffering and start healing her. It is a very emotional darkness to this terrible disease.


                      • #12
                        Re: HCM is much more thence physical disease it's hurting us emotionally HELP

                        A couple of thoughts..
                        First, be sure you are taking care of your own physical and emotional needs and health. A lot of women see that as selfish, but it is a necessity if you are going to get your family through this.
                        Second, your son must know that you will love him and always be there for him no matter what, but don't pussyfoot around the experimentation. Don't let his HCM "buy" him a pass to act out in other destructive ways. Boys can get very angry at their mothers for being hard on them about that, but in doing so, you may be saving his life. Hopefully he can continue with NA and find support there.
                        Unfortunately you have two very hard aspects to deal with - the common boy/experimentation issue and his HCM.
                        Wishing you the best and keeping your family in my prayers.
                        Diagnosed at age 53 in April 2010 (after having been
                        "cleared" several times)
                        Into running & cycling - cleared to continue at mild to
                        moderate level
                        Extensive family history
                        Lost my mom, aunt and nephew to SCD
                        St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"