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Did you have a good HCM day or a not so good HCM day?

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Lisa Salberg Find out more about Lisa Salberg
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  • #46
    Re: Did you have a good HCM day or a not so good HCM day?

    Hello, All!

    Today is a great day for me in spite of the chest pain that I had today and yesterday - I'm still happy about my visit with Dr. Day on Friday. So, even though the walking is wearing me out and I might have overdone it, I have the comfort of knowing that I am NOT crazy. And that means a lot.

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    • #47
      Re: Did you have a good HCM day or a not so good HCM day?

      Good day today, better day Thursday! (day off)
      Paul
      Diagnosed April 09, 2009 age 45 (asymmetric) HCM
      'Dad' to two girls 12 & 14 (14 is clear, 12 has appointment)
      "it's all good"

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      • #48
        Re: Did you have a good HCM day or a not so good HCM day?

        This is a really good idea to ask people how their days are going with HCM.
        Very good idea.
        Me; Kendra-14 years old(has HCM)
        My mom; Jodi-39 years old(HCM free)
        My sister; Kayla-17 years old(HCM free)
        My dad; Kenneth-(died from HCM at 25 in 1995)

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        • #49
          Re: Did you have a good HCM day or a not so good HCM day?

          I had such a good HCM day that it makes me wonder why am I having this myectomy on June 10th! I biked about 8 miles with no SOB, I walked through our backwoods with no SOB and had a great "camping" weekend in our backyard with no SOB. Life is good! I guess gradient readings don't lie though...so I'm still on for the 10th! Wish me luck! Christa
          Myectomy-Cleveland Clinic
          June 2009
          Aortic Valve Replacement, Mitral Valve Replacement, Tricuspid Valve Repair
          December 2014
          Dr. Smedira

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          • #50
            Re: Did you have a good HCM day or a not so good HCM day?

            I have them both...good and bad. I'm excited that I can walk a mile...moderate pace. However I become symptomatic after the walk....Essentially a good week because I CAN walk but not so good cause I always pay for it. Can I stay in the middle of the 50/50.......lol.

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            • #51
              Re: Did you have a good HCM day or a not so good HCM day?

              OMG!!!!!!!!!!! I'm bawling right now after reading michael obrians comments........he sounded like so many of us........my heart is aching for what his family has gone through....his pain is over now....their's isn't. I'm blown away.

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              • #52
                Re: Did you have a good HCM day or a not so good HCM day?

                Originally posted by Seabee Vet View Post
                Hi My Friends,

                I've been gone for awhile, had to get a new hard drive installed and rebuild my programs.

                I have been working with a new Cardio Doc at the Minneapolis Veteran's Hospital and he is determined to find out why I still have problems with shortness of breath and stairs.

                He is referring me to a "Group of Specialist's" who will do some tests (?) and try to determine the cause. According to my last echo, my 'heart is hard'. Possibilities: the entire heart has thick walls making it difficult to flex, the sack around the heart collapsed after the surgery and is constricting it or ???

                We have not gotten into a discussion concerning Agent Orange aggravating the original condition, but studies are being done on that.

                So, there is still hope to feel 'normal' again.

                An added footnote: I am now at 80 percent service connected disabled and by the beginning of September I SHOULD be 100 percent because of my unemployability, which the VA is basing mostly on my HCM and Post Traumatic Stress (PTSD).
                this caught my attention cause i've been having Dyspnea all of a sudden about like a month and i half ago. it used to come and go but these past few days its still there. i mean. we all are different but yeah i hope you're doing fine.

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                • #53
                  Re: Did you have a good HCM day or a not so good HCM day?

                  Welcome Angel. Please start a new thread to introduce yourself.
                  Reenie

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

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                  • #54
                    Re: Did you have a good HCM day or a not so good HCM day?

                    Well today has been fair at best. Walking to the kitchen got me out of breath but later on I walked around several stores and an outdoor mall with little problem. it seems I just never know how I am going to be.


                    Sent from my iPhone using Tapatalk - now Free

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                    • #55
                      Re: Did you have a good HCM day or a not so good HCM day?

                      Ah yes, the consistency of HCMs inconsistency....it can make you doubt your sanity some days. Last night I was standing on the porch talking to my daughter and I got short of breath just talking...felt cold and clammy too, a new symptom for me....never had that one. I began feeling better in the car on the way home and was able to walk up the stairs to my apartment with just the usual amount of dyspnea. Today was a very tired on the couch day ;-(......Hoping tomorrow will be better.
                      After years of symptoms:
                      Officially Diagnosed HOCM 2006
                      Myectomy 3/11/13 at non-COE
                      Extended Myectomy 7/23/14
                      At Mayo with Dr. Joseph Dearani

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