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sassydeborah My father died at the age of 26. My drs. believe that he suffered from HCM. Find out more about sassydeborah
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  • Forced to stop working

    Hi! I am new to this forum--this is my first post. I was diagnosed in 2000, and my symptoms have gotten progressively worse. I had a defibrillator /
    pacemaker implanted in Dec. 2005. I am 58 and have worked in the same factory for over 39 years (unfortunately we do not have 30years and out retirement). Two weeks ago I finally gave up and admitted that I can no longer work. My cardiologist has been after me to quit for over a year. I am able to do many things if I can pace myself and take breaks as needed, but to work at my physical job (lifting 50lbs., etc.) keeps me exhausted, dizzy, short of breath, and with pressure in my chest. Now that I have cried on your collective shoulders, I will get to the point. I will be applying for Social Security Disability, and would like to hear from others who have gone through that process. I'm sure there are many horror stories and hope there are also successes. Thanks for your time! SassyDeborah
    Sassy Deborah
    Diagnosed with HCM 2001 at age 52
    ICD implanted December 3, 2005
    Finally saw HCM Specialist (Dr Lever) Oct. 24,2008
    Myectomy performed at Cleveland Clinic Dec. 3,2008
    Father died at 26 (1952) suspected HCM

  • #2
    Re: Forced to stop working

    Social Security disability is a difficult thing to attain usually. It's not uncommon for there to be appeals. Stick to your guns and make sure you have all of your documentation in order before you start the process. If you have your doctor on board it will help too. Good luck!

    Have you seen a specialist on your HCM? I wonder if more could be done to control your symptoms. Maybe if you called the HCMA office you could find out if there are any specialists, not just cardiologists, in your area.
    Reenie

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

    Comment


    • #3
      Re: Forced to stop working

      Hi Deborah

      Fortunately I have been one of a few that hasn't had to fight for disability. What plans, if any, does your doctor have for future medical procedures. Has your doctor indicated that you should be placed on a transplant list?

      My health went downhill very fast. My cardiologist had been strongly urging me to quit work and go on the transplant list for about 3 years. When I got to a point that walking 1/2 block and sometimes walking from one room to another was an effort I gave in and took my cardilogists suggestion. I was placed on the transplant list and I applied for disability. I was approved on my first try, but my oxygen level when on a treadmill was 8 which is very low and I had the support of my cardiologist because of my complications and test result showing I could no longer work.
      Good luck to you.
      Esther

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      • #4
        Re: Forced to stop working

        Hello Sassydeborah:
        I did not have to fight I had applied just after having a myectomy and was in bad shape prior to the surgery and I was still doing very poorly up until recently and I still have some rough patches that last for days. Another reason that it was not such a hard task was that I was already on long term disability through my employer.
        As you have already heard get you doctors involved in this mission because my doctors here at home and in Boston have been awsome about helping me get what I have needed.

        You can send me a pm if you'd like...

        Best of luck.
        Nikki
        ------
        "I will live each day with the love and help of my family and friends."

        Diagnosed w/ HOCM Feb. '05, ICD April '05, Myectomy Dec. 13th, 2005 at NEMC
        Wire fractured, ICD and wire replced on 10/17/2008.
        Adopted in 1979, no medical history passed on other than born with a murmur and leaky valve.
        Married 9 years to the greatest husband that a woman could want.
        Mother to a wonderful 9 year old boy. So far he is negative for signs of HCM.

        Comment


        • #5
          Re: Forced to stop working

          There are law firms out there that specialize in SS Disablitiy coverage. There are certain protocols that need to be followed to even have a chance at coverage.

          Make sure you do your homework before applying. What you put on your initial app could haunt you in an appeal process.

          I am not an expert on the area, but if you are on the bubble from what may or may not get covered, it may make sense to look into some professional advice.

          My 2 cents...

          Dave

          Comment


          • #6
            Re: Forced to stop working

            IF you have any trouble...and maybe you won't...I know of some people who used the law firm Binder and Binder. (You might have seen them advertised on the TV.) Actually they were very good and both the parties I know got positive results rather quickly. I can't advocate for this firm, since I don't have first-hand experience, however. I am sure many firms who specialize in this area would be equally successful.
            Just arm yourself with every bit of "back up" information you can get your doctors to provide and maybe you'll be lucky on the first shot.
            Best
            Linda G
            Son died of cardiac shock second to HCM at age 36.
            Live Well...Laugh Often...Love Much

            Comment


            • #7
              Re: Forced to stop working

              Given your work history and age, you should not have any problem in obtaining disability. There is something magical about being 55. If your job required more than light work, you should be an allowance with no problem.
              Preston

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              • #8
                Re: Forced to stop working

                I'm in the process now of ssi, get the support of your doctors and don't give up. It is likely your will have to appeal from all I have heard.

                Comment


                • #9
                  Re: Forced to stop working

                  Its quite easy to get SSI or SSD They send some papers to your doctors and the doctors fill them out. If the Doctors write on there you can't do certain things you are disabled. All you need is a good doctor

                  Comment


                  • #10
                    Re: Forced to stop working

                    One of the best things you can do is go to www.ssa.gov and look up the 'blue book' or listing of impairments. It is a listing of every body part and conditions that SSA finds disabling and what criteria and tests you must meet in order to qualify for ssdi under their rules. Look up cardiomyopathy on the list and see what you must prove. You need to show there is nothing in the national economy that you can do. But your age helps you alot. They consider 55 advanced age! They don't expect you to be retrained into another job like people younger than that. If you get denied, be sure to appeal. Most people win al the alj (administrative law judge) hearing where the judge has more leeway. You need to show why your symptoms keep you from working and submit all testing that helps your claim. good luck to you. I think you will eventually win. Perhaps you can collect state disability until the ssa claim is settled. It can literally take years to win your ssdi claim.

                    Comment


                    • #11
                      Re: Forced to stop working

                      Originally posted by craqbin View Post
                      Its quite easy to get SSI or SSD They send some papers to your doctors and the doctors fill them out. If the Doctors write on there you can't do certain things you are disabled. All you need is a good doctor
                      It's not always that easy. My mom had cancer and had filed and appealed several times. She wasn't granted disability until about 3 weeks before she died of the cancer. And then it wasn't granted to the date of the first filing, although another appeal amended that.

                      In her case the doctors did everything they could to get the disability granted but it was the legal system that was messed up. The original judge was told by one of the higher appeal judges to either explain herself and her decisions or to step down, which ultimately happened.
                      Reenie

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

                      Comment


                      • #12
                        Re: Forced to stop working

                        Hang in there. Your situation hit home with me in that I have hcm at 47 and am in a physical job. I also wonder how long I can keep it up, and also be safe around the machinery if I pass out etc. I have no answers but share your concerns.

                        Comment


                        • #13
                          Re: Forced to stop working

                          Some people are very lucky to get approved the first time. Most are denied and go through a lengthy appeal process. We have been fighting for seven years to get Tommy on Social Security. We just received a notice for an up coming hearing. He has been in Hospice care for 6 months now. He is some how surviving on a heart rate of 28.

                          I have seen many sick individuals that deserved to get S.S. have to really fight for it!! If you can get the actual imparments guide and know the ones you qualify under and have testing to back it up, you will find that you have a better chance at winning. Much luck.

                          God Bless!
                          Sherry
                          tommysgirl wishes you a blessed day with many laughs and smiles along the way!

                          Wife of Tommy Hall passed 9/22/07
                          HOCM, (AA x2, CABG, RFA, Myectomy x2, Maze)
                          Tomy 13
                          Amber 25
                          grandchildren Aiden 6, Maddie 4

                          Comment


                          • #14
                            Re: Forced to stop working

                            Just a quick note to thank all of you who have taken the time to answer my questions. I really appreciate all of you for sharing your experiences. I would have posted sooner, but the first couple of times I tried I wasn't able to post.
                            I'm having some trouble navigating the site, but I'm sure I will learn.
                            The good news is that I'm having more good days since I quit trying to work.
                            Thanks again! I hope today has been a "Good Day" for you!
                            I'm including a picture of me with my major support system (my mother---Betty and granddaughter---Erica).
                            Sassy Deborah
                            Diagnosed with HCM 2001 at age 52
                            ICD implanted December 3, 2005
                            Finally saw HCM Specialist (Dr Lever) Oct. 24,2008
                            Myectomy performed at Cleveland Clinic Dec. 3,2008
                            Father died at 26 (1952) suspected HCM

                            Comment


                            • #15
                              Re: Forced to stop working

                              Deborah

                              I'm glad you are feeling better and for many more good days

                              Shirley
                              Diagnosed 2003
                              Myectomy 2-23-2004
                              Husband: Ken
                              Son: John diagnosed 2004
                              Daughter: Janet (free of HCM)

                              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                              Comment

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