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

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Lisa Salberg
Lisa Salberg
Lisa Salberg
HCMA CEO and Founder
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  • #1

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

    Lets try this for a while.
    Those of us who have HCM know there are days we feel that there is NOTHING wrong with us...and other when HCM rules the day and reminds us that our hearts are not in fact "normal".

    From time to time I will re-post this Poll (as you may only respond to each poll one time) to see what % of us are here on good days vs. bad days.
    After we have collected some data...then we can come up with new ways to provide services that fit your needs.

    lets use the 50% rule to judge a good vs a not so good day - if you feel rather well for 50% of the day..vote good day...if your not feeling so great for 50% of the day vote not a good day...if it a split..YOU pick
    77
    Good Day
    57.14%
    44
    Not such a good day
    42.86%
    33
    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)
    Tags: None
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  • #2
    I have been feeling much better lately. I Spoke with Dr Maron and so now i am down to 80mg tid of inderol and 120mgbid of verapamil, we are hoping that maybe this will help. the thought is maybe i am taking too much!
    I still am having chest pain but not everyday. I am still only working 4hrs a day. Somedays i feel i could work all day and others i don't no if i can make it that long.
    Cliff and I went to Las Vegas this last weekend and had a good time we flew friday, i had to have O2 on the way up and back, I did okay until sunday night then i just went back to our room rested and breathed on the oxygen. We had a great time Glad we went.
    Laura Johnson

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    • #3
      Laura - That is great! I hope you made some $$ in Vagas!
      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
        Actually broke about even, but had a great time! Thanks
        Laura Johnson

        Comment

        • #5
          Re: Did you have a good HCM day or a not so good HCM day?

          I wanted to jump start this thread again - -
          FYI I had a good day -- not great but good one and thats worth a ton to me!

          Sometimes we may forget to enjoy the average days ...but today was just about symptom free and I got a great deal done!

          How about the rest of YOU???

          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

          • #6
            Re: Did you have a good HCM day or a not so good HCM day?

            Lisa,

            Thanks for helping me reflect on this again! Today has been a real good day for me--I walked my morning walk faster than I have in several weeks and had no HCM symptoms.

            Pat

            Comment

            • #7
              Re: Did you have a good HCM day or a not so good HCM day?

              A rare good day for me

              Comment

              • #8
                Re: Did you have a good HCM day or a not so good HCM day?

                I would say this was a good day for me too... I walked without getting short of breath, no dizziness and no palpitations... I guess I felt "normal" today???!!!???
                Let hope for more like this~!
                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

                • #9
                  Re: Did you have a good HCM day or a not so good HCM day?

                  I would say today is a good day. I have to walk 2 city blocks on either end of my subway ride to work. I made it at a fairly good pace with only a little SOB and not chest pain. Some days it's more like a leisurely stroll and still get SOB and chest pain. I even had a meeting in the a.m. and was able to stay focused during the meeting. WOW!!! So today is a good day. Steve.

                  Comment

                  • #10
                    Re: Did you have a good HCM day or a not so good HCM day?

                    Today is a good day. I'm asymptomatic currently so I guess I'm "normal". There are times though that I may feel more tired than usual, probably the beta blocker or other problems. Anyway, must start working on self to achieve a higher quality of living.

                    Well, I hope everyone else has many more good days!

                    Comment

                    • #11
                      Re: Did you have a good HCM day or a not so good HCM day?

                      Yesterday was a good day, but I over did it. Now today I'm paying for it, I'm really tired today and I have a bad headache. I'm drinking lots of water and resting as much as I can.
                      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

                      • #12
                        Re: Did you have a good HCM day or a not so good HCM day?

                        That sounds like a good idea - DRINK DRINK DRINK
                        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

                        • #13
                          Re: Did you have a good HCM day or a not so good HCM day?

                          The last couple of days haven't been too bad not real good but not too bad either if that makes sence

                          My pain in my chest has been less but still there jusy annoying, but ive been taking it easy like Dr. Gilligan says

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

                            today I had good day .I felt ok physically but I was blessed not to spend all day preoccupied by hcm.some days its like im waiting for the other shoe to drop,Im afraid onanother level to post that today was a good day .Its like some gremlin hiding in my chest is going to get back to work,if he hears me. today was my wifes baby shower it went well. we had it in the chinese buffet restaurant they have a little room for partys. she was almost suprised ,but she saw on of her friends near the entrance and that blew it. well I hope everyone is feeling ok god bless mikeob
                            One day at a time.

                            Comment

                            • #15
                              Re: Did you have a good HCM day or a not so good HCM day?

                              You probably did pretty good if you had her in the dark for that long. Congratulations, we're all anxiously waiting with you - Linda

                              Comment

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