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wildman2088 Find out more about wildman2088
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  • working or not with hocm

    Hi all i'm a 57 year old male with hocm (hypertrophic obstructive cardiomyopathy) i lost my job due to inability to preform my job duties as expected by my bosses. so now i am driving a truck but for how long is debatable. as i have a lot of shortness of breath with any physical involvement.brief medical history lost my thyroid @4 yrs. ago Took the doc's. almost 3 yrs to get my Rx right so i gained 70 lbs. then i found out i had hocm. i take topril xl and htc for that now because of swelling of legs and hands i take lasix 20mg. twice a day 81 mgs of asprin a day also i am having more and more shortness of breath and overall tiredness my heart doc is the leader of this type of heart problem he has done all the tests echo holter ekg heart cath and 2 types of stress test. my question is do I try to keep working or apply for social security disability? t is harder and harder to work if I try an office job I don't make enough money to pay the bills. wife works but doesn't drive. I get the impression my doc docent want me to apply he thinks i'm to young. and if i lose 20 lbs my sob will be better. right now just putting on my socks will have me huffing and puffing for 5 min. any ideas ????

  • #2
    Welcome, I'm glad you've found us. Please call Kelly in the HCMA office and have her help you find a good time to talk to Lisa. You will find much support and info here on the message board, but individual attention to your specific situation is what you will gain from talking with Lisa. Maybe you can arrange a time when you and your wife can both talk. Best wishes, Linda

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    • #3
      Has your doctor told you anything about having a gradient? There may be other medicines or surgery that might be able to relieve the obstruction and make you feel a LOT better. Please, do call Kelly and Lisa. The phone number is 973-983-7429. I think they will be able to help you.

      Reenie
      Reenie

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

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      • #4
        I have a few ideas - lets talk - call me in the morning.

        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)

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        • #5
          Sorry you are struggling so, with symptoms-we've all been there. I encourage you to speak with Lisa, as there are a couple of treatment options available, in addition to meds. Do know, you can never be cured, but your symptoms can become much more manageable. Lots of people are capable of working after these proceedures. So Hope & Help is on the way!
          Good Luck
          RONNIE

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          • #6
            Hi Wildman and welcome

            I do not have a thyroid gland anymore either. I had thyroid cancer -- papillary carcinoma -- the most common type of thyroid cancer.

            Almost 9 years ago I had my thyroid removed and I received radiation. I take Levoxyl. It took my doctor a long time to get my medication right too, only I was hyperthyroid for a long time. Not good for a HOCM heart.

            I also have Hypertrophic Obstructive Cardiomyopathy, and I am also applying for disability, I am 41 years old.

            If you really think you need to -- apply now, because there is a very good chance that you will get denied the first time.

            I was denied the first time I applied, this is my second try. And if your cardiologist or doctor says that you should not get on disability yet, please consider talking this over with him.

            My last cardiologist said that I will be fine, and she never even saw my echo report. Her partner (another cardiologist in her office) read my echo from the technician and he did not say anything to me or to her, he does not know much about HCM. I was very misguided by those group of doctors.

            I have since changed cardiologists. My new cardiologist took one look at me and said "You need to get on disability now."


            I no longer can work, and when I did, I made good money, I would rather work than go on disability, but now, I do not have much of a choice. I had a professional career and now I am too exhausted to work because of heart failure. I am not overweight and I do not smoke or drink, so that is not always the case.

            I wish you the best. And it is good to have you here with us.

            Hugs,
            Eileen
            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.

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            • #7
              Also, Wildman,

              I am guessing that you had your Thyroid surgically removed (?)
              Do you know if they removed or damaged your Parathyroid Glands?

              There are 4 Parathyroid Glands, they are very small and they are next to the Thyroid Gland, they regulate the calcium in your bloodstream.

              (Sometimes they are removed during Thyroid surgery because they are so small, or there are times when they are damaged, also because of the surgery.)

              Do you have your calcium levels checked when you have your TSH checked? It is a good idea to have your blood calcium checked too.

              When I had my thyroidectomy, I had extreme Hypocalcemia because they removed and/or damaged my Parathyroids too. (The surgeon did not intent to do that, but he did.)
              In the hospital, I was given calcium intravenously and some medication for Hypoparathyroidism and Hypocalcemia.

              And here is another dumb doctor story. After the radiation, they never told me I needed to take calcium. My Endocrinologist never once mentioned that I needed calcium. I went in to his office and complained of terrible leg cramps and he said, "Oh, then just take some calcium."

              I guess the surgeon and the Endo did not talk about my Parathyroids being removed and/or damaged.

              And yet all of these idiot doctors knew of my heart condition. So for a long time, I went without proper amounts of calcium in my body, not good for my heart.

              (You know, when I worked, if I failed on the levels that they do, I would have been fired immediately.)

              Anyway, I thought I would pass this along, just so you have an idea. (In case you were never told.) When you can, please have your calcium checked just to be sure, if you have not already.

              Hugs,
              Eileen
              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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