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  • does everybody work or are you disabled?

    hi everybody my name is tina and I havent worked for the past 3 years.
    My dr. said he would suggest that i didnt and said i was permantly disabled.
    I am only 31 years old and it is alot for me to accept can anyone give me any advice on how to start my life over?
    Hi I am new to the group, I have been diagnosed with HOCM for 6 years now and it is emotional tearing me apart and phsically. I just dont know what I should do

  • #2
    Re: does everybody work or are you disabled?

    Hi Tina,

    Welcome to the board!

    I'm sorry to hear that you've had such a tough time of it. I'm curious as to why specifically your doctor told you that you are permanently disabled by your HCM. Do you feel that you and your doctor have explored all available drug and/or surgical options to control your symptoms? Have you seen a specialist, or at the very least, a cardiologist with experience in HCM? There's no cure for us HCM'ers, that's a fact, but there's many treatment options available to significantly improve quality of life. A lot of people will jump in here and offer advice and support, and you should also consider having a chat with Lisa at the HCMA to help you explore your options.

    Take care of yourself... we're happy to have you with us

    Jim
    "Some days you're the dog... some days you're the hydrant."

    Comment


    • #3
      Re: does everybody work or are you disabled?

      Hi Tina. I am sorry to hear of your intense struggle with HCM. All of us here face our battles, but some (like yourself) seem to have more intense battles.

      Have you been to a HCM specialist? Seeing someone who specializes in HCM can be a great help in determining what kind of restrictions you should live under.

      This board is also a GREAT HELP! The people are caring. You can get real and detailed information (of course each case needs to be evaluated individually). So feel free to ask your questions. You will find a warm, supportive community of people who genuinely care about you.

      I notice that three of us on this thread are from PA. Maybe we should get together sometime, invite Lisa and have a HCM party.

      Peace,

      Leon
      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness

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      • #4
        Re: does everybody work or are you disabled?

        Hi Tina,
        I’m seventy one, and quite frankly, I don’t want to work. (Yeah, having HCM isn’t the end of the world.) I did retire early – at 62 – when the hill got to be too steep to climb, but after a rest (running a business from home for two years), I did contract work for a few more years. I finally really retired about four years ago.

        I suffered the effects of HCM from my youth, but the last fifteen to twenty years was when it really began to affect my quality of life. I wasn’t properly diagnosed until this past January – was hospitalized twice with HOCM attacks in December – and switched to my current cardiologist, who deals with HCM patients. He made some major changes to my drug therapy and it helped quite a bit. I still have a long list of maladies, but HCM is no longer very high on my list of problems.

        Is your cardiologist ‘up’ on HCM? Many cardiologists are not. How many HCM patients does he treat? What kind of drugs are you on? What were the results of your last echo? Etc, etc. Why don’t you give Lisa a call? She’s in the office Tuesday’s and Thursdays and is of great help to everybody. You might instant Message her to set up a time to talk convenient to both of you. It can’t do any harm, and it might do a world of good.

        Welcome to the boards. Hope we can be of help.
        Burt

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        • #5
          Re: does everybody work or are you disabled?

          HCM is very broad. Some of us run and work out and others are disabled.

          I work full time but I'm tired all the time.

          You don't say anything about how you feel or how much you can do or your condition, so we can't give you very good feedback.

          I'm 35 and I had a stroke at 31 (HCM complications) but I recovered.

          Are you seeing an HCM specialist? How are you feeling? How much can you do? Can you go up stairs?

          S

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          • #6
            Re: does everybody work or are you disabled?

            I just wanted to echo what everyone has already said. I am 39, and although I have good days and bad, I work 25 hours a week and raise my 2 year old son. (That is more work than going to work!)

            I can exercise at a moderate/slow pace, but try to walk or do a elliptical trainer for 30 min. 3 x a week. I have trouble on more than one story of stairs without a rest, or walking on hills, but I muddle through.

            You need to find what meds or procedures will work for you to make your quality of life better. Don't give up! There is alot that can be done, but you need to be treated by someone who knows what to do, an expert in HCM, which most doctors aren't. Call Lisa at the HCMA office. She will help you.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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            • #7
              Re: does everybody work or are you disabled?

              I want to echo the other Respondants, regarding an experienced, Knowledgeable (HCM) Cardiologist. My Story: 56 year old Female, raised 2 children, diagnosed almost 20 years ago. I worked Full time, exercised, and felt my symptoms were controlable with Meds, until last year. I had a Myectomy last summer-returned to work after 3 months. I opted to Retire (disability), in January. My local Dr. was super about staying abreast of all therapies, talking & reading & learning. He saw me every 6 months, until last year, when it became almost weekly. He constantly tweaked my Meds & was super supportive-I credit him for keeping me stable for so long! I've also had CHF (hospitalized) during the years.
              RONNIE
              RONNIE

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              • #8
                Re: does everybody work or are you disabled?

                I was a teacher for fifteen years. I received full disability over four years ago. I was 39 then. It was a big change. I have my masters in administration. I was on a whole different path. Yes, I have seen Dr. Lever. I wish I could have an operation, but I cannot. So I take life super slow and try to remember to cherish everyday.

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                • #9
                  Re: does everybody work or are you disabled?

                  hi tina

                  im 31 diagnostic as hcma since 16, with impressing fammily history of SD.
                  i've been in hospitals more than an avarge person goes to hotels
                  so my condition is not so gleaming
                  i started to work 4 years ago after i didnt belive i will got the strangh to do so but i took a chance and jump to the water after endless doubts
                  and the conclusion for me is very clear i need to work as much as i need air
                  althogh i work to hard (9 or more hours aday) i dont want to go back to the times i have been at home all day listening half time to music half time to my heart and feeling sorry for myself no matter what im hearing.
                  my job made me much much stronger mentally and for my suprise i feel physically beeter on work then from home(i realy cant explain that).
                  when i work and among pepole i can handle in most times the symptoms i have.
                  offcurse i still have bad days and sometimes at work i feel very weak and tired and all i want is to go sleep for 10 years or so. but so far i have manage to handle it.
                  i dont know if it will stay like that for good but i will not give up
                  as for you please please dont give up try to get other opinoion maybe half job whould be ok.my theory is that we can all work ! some of us very few hours some of us more in a kind of job that is not to importunate

                  wishing you all the best

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