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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • applied again

    Well i have made an appt with Social Security again to try and get my disabilty it is Monday at 10:30 am, wish me luck, I have been turned down now 4 times

    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

  • #2
    Good luck. I hope you get it.

    Reenie
    Reenie

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

    Comment


    • #3
      Good luck! Did you get a letter from your HCM speicalist? If not you should ask for one.

      Take care,
      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


      • #4
        Good luck . I know what the turned downs can do. My wife has been twice now and still waiting.
        Joe Del

        Diagnosed @ age 45 with HCM June 2004; ICD Implant: September 2004. Fifteen years prior was tested and told had an anxiety attack. Second ICD implanted May 5, 2009 with adding second lead.

        My biggest part is the depression and now on disability.

        Tested positive for HCM gene and all three children are negative.

        Husband and father of three children: Son 18 and two daughters 13 and 7.

        Comment


        • #5
          Shirley,
          Wishing you good luck with your Mon.appointment. How low do oxygen blood levels need to be for you to be placed on the transplant list and have the Drs given you any idea how much longer it will take until your levels reach that point? You continue to be in my prayers.

          Best wishes,
          Joyce
          \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
          Pierre Teilhard de Chardin

          Comment


          • #6
            Joyce

            Normal from what i'm told for a woman my age which is 48 and the Norm is around 32 mine now is around 23, i was told they could put me on the list but it would be like not being on the list at all because i would be at the bottom of the list, but my fear is i will never make the list if they wait, but i have to wait because the doc just won't put me on the list, I just hope nothing goes wrong and i become too weak for all the testing that has to be done

            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


            • #7
              Shirley
              Good luck! I hope this is the last time you have to apply.

              The waiting and everything you must do in order to get disability. I think it's rediculous. What more proof do they want!

              I'll be thinking of you on Monday.
              Esther

              Comment


              • #8
                Lisa and Everyone

                Lisa i have a letter from Dr. Maron and Dr. Gilligan and my family Dr., You know they tried telling me i would be turned down before he gave me the appt, saying my husband makes too much money, so i said if i divorce my husband i could get my disability. which my husband should have nothing to do with my Social Security but this is what they have been telling everytime i apply, I'm really lost here


                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


                • #9
                  Shirley, I think you are getting bogus information. Your health does not have any thing to do with your husband's salary. They do look for all angles to deny you. I am assuming they have all your medical records from all your providers. I was denied one time and was given the name of an attorney to see who represented me when the judge came to town. by that time I was in Restrictive Cardiomyopathy, so there was no problem. Good luck.
                  Midge

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

                  Comment


                  • #10
                    Dear Shirley


                    Midge is right your husbands income has nothing to do with your disability. I had no problem but I have heard some horror stories. I was just approved again on my seven year eval. Just make sure you have everything they want and good luck.

                    Karen
                    Karen Cicconetti
                    Heart Transplant 1998
                    Don\'t take your organs to heaven
                    Heaven knows we need them here

                    Comment


                    • #11
                      My mom is one of the horror stories but she's appealing as we speak. She's had cancer on and off since 2001 and has permanent nerve damage due to the chemo. In the past year she's had a relapse of the cancer and a stem cell transplant and they're still denying her. We're hoping the appeal process works and she isn't denied any longer, but we aren't holding our breath.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Shirley,

                        I just finished the disability process myself so I understand what you are going through. In PA, to qualify for any state assistance programs such as what I'm getting at school, you have to apply for SSI. You don't have to win, you just have to make the effort.

                        What strikes me about the process is how much it's geared toward making sure you don't get it! What's more, the process is definitely not geared toward disabilities such as HCM. Sure I can lift 50 pounds, bend at the waist, walk up stairs, stoop, crawl, stand, and all the other things they ask. What they seemingly fail to understand, is that HCM is an all or nothing proposition. It doesn't just affect one specific motor function or ability to perform a certain task. On really good days us HCM'ers can probably do all of the things they ask... but on bad days many can barely get out of bed.

                        And the physical exam is a joke. The doctor (that they chose for me of course) had me lay on a table and bend my leg, then my elbow, etc. and asked me if it hurts. That was it. LoL. Then when it came time to discuss symptoms, for each and every one I mentioned she said the same thing over and over... "Well that's probably because you're overweight". I never had a chance. I'm telling you, if I actually had as much riding on this as some of you folks, I'd feel like I was totally discriminated against.

                        I'm looking forward to getting my decision soon, just so I can say I'm finished with the darn process. My heart goes out to anyone going through it.

                        Good luck Shirley!

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

                        Comment


                        • #13
                          Jim

                          My girlfriend said wear your Oxygen in there they gave me portable oxygen also, and i do use it sometimes and i also have gotten all my tests from all my visits to any doctor i have ever seen since i was diagnosed, hopefully this time it will work, I hope things turn out well for you also



                          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


                          • #14
                            Thanks Shirley,

                            Trust me when I say that the decision will not affect me either way, since I really didn't go through the process with the attitude that I actually wanted to get it anyway. Later in the process though, the SSI guy who is handling my decision told me that he will try to get me something for that period during which I was significantly disabled by my obstruction. After he told me that, I regretted not putting a bit more effort into the process. I didn't realize that they could go back in time. Lesson learned I guess.

                            I really hope things work out for you...

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

                            Comment


                            • #15
                              I wish you the best of luck Shirley.

                              Hugs,
                              Eve
                              49 yrs. old
                              Diagnosed at 31.
                              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                              My brother passed away suddenly at 34 yrs old from HCM.
                              2 teenage children, ages 17 and 15.

                              Comment

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