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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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  • #31
    Re: Did you have a good HCM day or a not so good HCM day?

    Thanks Doug - its rare I get in a funk like that & it takes me (and everyone) by surprise. Thanks for the encouragement. looking forward to meeting you when you get here.
    I received a FANTASTIC (as our Governor in Caleeefooorneeea would say) letter of support from our fearless leader Lisa and my cardiologist at UCLA commented on what a great letter it was. I did have a discussion with the folks at Blue Shield and I'll know more soon.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

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    • #32
      Re: Did you have a good HCM day or a not so good HCM day?

      Not a good day today...I think I am taking too much Verapamil and it really slows me down. Lots of palpitations and just a whole lot of SOB and tightness in the chest.
      Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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      • #33
        Re: Did you have a good HCM day or a not so good HCM day?

        Any day when I don't sleep 20 out of 24 hrs is a good day! Today, I was up early, had my "bowl" of amoxicillin for breakfast and went to the dentist. It is a very good day!!!

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        • #34
          Re: Did you have a good HCM day or a not so good HCM day?

          Today is a good day but on Monday I had afib for 4 hours and I was wasted. This was the first time in almost a year. This is my first post

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          • #35
            Re: Did you have a good HCM day or a not so good HCM day?

            Welcome to the HCMA. I'm glad today was good, even if it wasn't so great on Monday.
            Reenie

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

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            • #36
              Re: Did you have a good HCM day or a not so good HCM day?

              Every day the Lord allows me to wake up and feel the sunshine on my face, hear the birds outside my window and the ability to be with my family and friends, I am having a good day. I have arrhythmias, chest pain and get sick of taking my meds, but I will not allow HCM to ruin anymore of the days that I have left. If I have only one more day or 50 more years, everyday that my heart continues to beat and I am able to look forward with hope, it will be a good day.

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              • #37
                Re: Did you have a good HCM day or a not so good HCM day?

                All in all a pretty good day today. I agree. Every day I wake up is a good day with the potential to be great.

                Had a great morning without much SOB or lack of energy. Went out and worked on the lawn this PM. Raking leaves this afternoon....that was a bit of a challenge, but I did it and got the project done....just took a bit longer than it used to with my "rest periods". . Oh well. "Slow go" is better than "No go" .

                Take care all.


                bucky
                Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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                • #38
                  Re: Did you have a good HCM day or a not so good HCM day?

                  I am a strong believer in weather and hormones playing a role in how I feel, on a hot/humid day I dont go far.
                  Yesterday was a break in the weather day, My family and I took the day off and went to the zoo and with the lower temperature and drop in humidity I was able to walk farther, and up inclines that on a typical summer day would be difficult for me to concur.
                  Today is a beautiful day as well and I have had no real issues to complain of, I feel almost normal, whatever that really feels like.
                  They say this weather may stick around for a week, that will be nice.
                  HOCM known since 1995, 12 yr old son HCM found 2008, 2 year old son clear of HCM

                  ''Life is not measured by the number of breaths we take but by the moments that take our breath away''

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                  • #39
                    Re: Did you have a good HCM day or a not so good HCM day?

                    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).
                    Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

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                    • #40
                      Re: Did you have a good HCM day or a not so good HCM day?

                      Today I feel great ! I'm sore and tired which is a very good thing.
                      Yesterday I cut firewood- anybody who has ever run a chainsaw in the woods will can attest to how exhausting it can be tripping over limbs, rolling logs and and hefting a saw for hours on an 80 degree day.
                      Last evening my arms and legs were sore my back ached and I was ecstatic !!!
                      I was able to breath, didn't have chest pain, and was able to work all afternoon.
                      It has been a very long time since I was able to work long enough and hard enough to get sore and tired instead of sucking wind and holding my chest after five minutes of light activity.

                      Funny how my perspective has changed.

                      WKevinD

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                      • #41
                        Re: Did you have a good HCM day or a not so good HCM day?

                        I'm feeling great finally. I had a septal myectomy on June 25, 2008 and I'm finally feeling 99% better(still sore at times). I'm a big time hunter and it feels amazing to get out in the woods and do some preseason scouting.

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                        • #42
                          Re: Did you have a good HCM day or a not so good HCM day?

                          It's not being able to figure out why some days are so much better than others that really makes me crazy. Was it something I did? something I ate? too much activity or not enough?

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                          • #43
                            Re: Did you have a good HCM day or a not so good HCM day?

                            Ma .. with HCM I do not believe there is consistently a rhyme or a reason to help any HCMers figure it out.. sorry for your struggles.

                            Pam
                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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                            • #44
                              Re: Did you have a good HCM day or a not so good HCM day?

                              well I'm feeling pretty bad today.

                              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

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                              • #45
                                Re: Did you have a good HCM day or a not so good HCM day?

                                Sorry to hear that Shirley. I hope the weather changes soon for you and you can get back into some improved quality.

                                As for me, I had enough energy this weekend to plant some vegtables/fruit. (Strawberries, cantelope, tomatoes, squash, peppers, peas-bought by mistake, and eggplant). It's been almost 11 months since my myectomy and I'm finally having some quality back !! (Doing the happy dance here in So. Fla!!!!!!!)

                                L
                                Onward and Upward !

                                Diagnosed 4/07 HCM with fixed & dynamic obstruction
                                Myectomy with resected cordonae tendonae 4/08 CCF
                                ICD 10/08

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