If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

just thought i say...

Collapse

About the Author

Collapse

purple_ness1 Find out more about purple_ness1
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • just thought i say...

    abc


    abc


    abc


    abc
    Last edited by purple_ness1; 02-02-2009, 05:56 PM.
    Margi*
    http://margi-inskeep.blogspot.com
    Forever Young

    I was diagnosedwith HCM at 6.
    Went into Atrial fibrillation so had a ICD put in at 16
    Went into Heart failure at 17
    Got a heart transplant at 21(2009)

  • #2
    Margie,

    I am glad things worked out in a positive way and you are here to write to us about it. I think you realize it could have just as easily been a tragedy and that someone in your family could now be writing to tell us about it. Your consideration to not drink heavy is a great start and I commend you on it . It will be hard but the best plan. Please , please consider not drinking at all. You have made a great first step in that direction.

    Blessings to you.

    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

    Comment


    • #3
      Margie, thank you for sharing your weekend with us. We weren't trying to judge you at all, we're just concerned for your safety. I'm glad you're all right and your friends aren't sitting now trying to explain to your parents why they didn't come get them when you really needed help. Please try to explain to them again that if you say you need help, you probably really do need help. Best of luck.

      Reenie
      Reenie

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

      Comment


      • #4
        margie,

        sounds like that was pretty scary.

        i think it is a smart move to cut back. the amount of vodka you had would make anyone at sick.

        i hope you are feeling better.

        later,

        s

        ps i found this article on alcohol --i had no idea that a hangover meant your brain was pulling away from your skull! OUCH! http://teenadvice.about.com/library/...ngsalcohol.htm

        Comment


        • #5
          Margi,

          It is easy to say your going to stp heavy drinking. Do it is another thing.
          Besides, you should not drink at all!
          Sounds like you like to drink & your not willing to give it up.
          A social drink - ONE - now and then is enough with HCM.
          Dr Lever will tell you none at all!

          It is easy to say it on the MB, but doing it for yourself is the real test.

          You need to commit to yourself & your family that you want to live.
          This is not a game.

          We are here for you when your ready.
          Cleveland Myectomy Club
          August 31, 2004

          Comment


          • #6
            re

            heya

            i dont think my friends ment 2 not get any one, but i dont think they wonted 2 get in troble and im not a big one in telling them about my heart , so im not realy sure if i wont 2 tell them about my heart so i might jut leave it at that but thanks any way

            ow thats grose about the brain pulling away from your skull , no more hangovers 4 me then

            yeah thats true easy said then done , its so great getting drunk! i guess ill find out this wekend how much wil power i realy have


            take care
            *margie*
            Margi*
            http://margi-inskeep.blogspot.com
            Forever Young

            I was diagnosedwith HCM at 6.
            Went into Atrial fibrillation so had a ICD put in at 16
            Went into Heart failure at 17
            Got a heart transplant at 21(2009)

            Comment


            • #7
              Hi Margie,

              I'd have to agree with Stuart. You really do need to commit to your health and living.

              You need to commit to yourself & your family that you want to live.
              This is not a game. .[/quote]

              I'd consider what you went through as a warning. Obviously there is a risk of sudden death with drinking. 4 months before I was diagnosed I got drunk at a birthday party. While running up the stairs I felt a sharp pain in my chest and couldn't breathe for about 4 seconds. It felt like my heart had even stopped. I can't remember too much as I was so drunk. I remember just being really scared for a bit.

              Now I don't drink because I want to do whatever it takes to live a long and healthy life and I feel that you should really consider what happened to you and decide if you want the same. It's easier to do than you may think. I know that you can quit. There's lots of great people here for support.


              Theo
              26 years old, diagnosed April 2005. ICD July 2005.

              Comment


              • #8
                margie,

                yeah, i know --the brain thing gave me the heebie-jeebies! Ugh!

                and yeah, that drunk feeling is fun for a little while but the aftermath sucks --as you know. i played around with drinking in college and then it just made me so sick that it i was too scared to have any at all.

                the longer you go without, the less you miss it. in my experience.

                good luck this weekend!!!

                S

                Comment


                • #9
                  heya

                  just a question why is it that i use to be able 2 drink and drink and my heart would always be all good ,and i felt like a didnt even have a bad heart
                  and now like the end of last year and this year when eva i drink i feel like crap ??
                  owell there alway party pills , let me guess there bad 4 me 2 ?
                  this suxs im 17 and i feel like im 70 cos i cant do any think without having 2 worrie about my dum heart ,that totaly takes the meaning out of "live life 2 the fullest"

                  take care
                  *margie*
                  Margi*
                  http://margi-inskeep.blogspot.com
                  Forever Young

                  I was diagnosedwith HCM at 6.
                  Went into Atrial fibrillation so had a ICD put in at 16
                  Went into Heart failure at 17
                  Got a heart transplant at 21(2009)

                  Comment


                  • #10
                    m

                    i hate to break it to you, but "living life to the fullest" does not mean getting drunk and doing drugs. i know it must seem that way as it lets you escape from reality for a little while, but party pills are worse on your brain than alcohol is --http://alcoholism.about.com/cs/drugs/a/blau030503.htm

                    living life to the fullest means achieving your goals --college, children, traveling the world, being successful in your career, whatever it is you want your life to be.

                    it's possible that all the drinking you've already done has done some damage to your heart so it can't tolerate it any more. listen to your body--it is talking to you.

                    yes--it sucks to feel old and it sucks to feel lousy but dying or becoming really too sick to do much of anything would be worse. and when you find stuff to do that you love, it won't be so hard to avoid partying.

                    do you write or draw or bead or volunteer or paint or keep a blog?

                    s

                    Comment


                    • #11
                      Margie,

                      I hear you about it sucking being young and not being able to do things. I was diagnosed with this at 21! I'm proud to say though that I've never been drunk or have never done illegal drugs. So, I can't relate to how hard it is to give it up. But, I've given up a lot too! I've had to give up on three careers and there is a chance I'll never get to have a career no matter how hard I try. When they said I could never be a full-time EMT I felt like they stripped me of my identity! I'm at the point I can't even drink a Mr. Dew. In high school and college my best friend and I called it "sacred water" because after a long night of studying you had to have one before a final! I used to drink three or four a day but now maybe once a month and I still feel horrible. I also miss playing basketball to no end!

                      I'm just so sick and tired of being dependent on all of these drugs that I just want to screa sometimes. And guess what sometimes I do. I've got a supportive roommate and he tries to help me get it out in the open. Becuase, if you keep it in its just gonna make it worse.

                      Find a support group and get more constructive hobbies. And if your friend doesn't like the Margie with a heart condition like they liked the old Margie well it's time to move on. I've had to do that and it hurts but It had to be done.

                      Mary

                      Comment


                      • #12
                        Margie,

                        Any comments that are made to you are out of concern for you and your well-being, not because we're being judgemental or are just old fuddy-duddies! Ok, well maybe some of us may be old fuddy duddies, but not me!

                        My brother started drinking in high school for "fun" and continued to drink heavily well into his 30's. He has HCM and is also an alcoholic, and believe me, the two don't mix well! I can't even begin to tell you how many times I literally thought he was going to die. After drinking, his chest would squeeze really bad, sweat would be pouring off of him and he'd be pale as a ghost. At my sisters wedding, he added dancing to the "activities", and I truely thought "oh my gosh, he's going to die tonight at this reception!" It was very scary!

                        He had a myectomy at CCF a few years ago and was put through the wringer prior to having it. He had to have a liver biopsy, and they tested his bone marrow, and all kinds of stuff to make sure he was ok for surgery d/t alcoholism. He said it was really, really painful...but even THEN he didn't quit drinking.

                        Good news though, he has been sober for 3 years now which is awesome! And, he still continues to go to AA meetings almost daily. He lives at, and works for a sober living home for men, and helps other people with drug or alcohol addiction.

                        I'm certainly not comparing the two of you, and I KNOW that you're not an alcoholic. It's just that knowing that someone has HCM and even if only occassionally drinks heavily, is scary to me and brings back "not-so-good memories".

                        Your friends need to know that if you're in a "situation with your heart" or not feeling well, they need to get help for you. In the big picture, getting yelled at, or grounded for doing something that you shouldn't be doing is pretty insignificant compared to what could happen to you without medical assistance. Fortunately for you, everything turned out ok this time. However, you are 17 years old now and know the risks that drinking or doing drugs can have on you. Please make your choices wisely.

                        Rene'

                        P.S. Stuart - you mentioned that Dr. Lever would say that not even one drink is good. Why is that?

                        Comment


                        • #13
                          Rene'

                          I'm a patient of Dr. Lever's as well and he does push for total abstinence. The primary reason for this is because of alcohol's arrhythmogenic properties. For HCM'ers, who are already at a disadvantage in the arrhythmia department, even just one drink can sometimes precipitate a cardiac event. That's not to say this will be the case with everybody though, and there are many folks here on the board who can and do enjoy a drink from time to time. But we also have members who experience problems after consuming less than one glass.

                          Also, since many of Dr. Lever's patients are there for myectomies, I assume there is increased risk of arrhythmia from alcohol because there is already a disruption to the electrical pathways from the surgery itself.

                          Lastly, he does not like to see his patients consuming empty calories. Dr. Lever is very concerned with weight-control and in making sure that his patients stay in the best shape possible to avoid putting any additional strain on our hearts.

                          Hope this helps to answer your question.

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

                          Comment


                          • #14
                            You know what absolutely amazes me?? I never hear, "Cynthia, you need to lose some weight as it puts added strain on your heart" from my doctors. The ONLY time I was able to lose a substantial amount of weight (about 5 years ago with Weight Watchers - lost 32 lbs.) is when my former cardiologist said these words to me, looking me strait in the eye! That's what some of us NEED to hear...directly from the horse's mouth so to speak. It's easy to say, "ya, I know, it puts an added strain on my heart so I will try to lose weight." At least for me...if a doctor says these words, I'll do it. I actually made up my mind yesterday that I need to lose around 20 lbs. I don't plan on overeating on vacation...for some weird reason, I usually LOSE weight on vacation..probably because I am more active when I go away.
                            \"It is not length of life, but depth of life.\"

                            Ralph Waldo Emerson

                            Comment


                            • #15
                              and now like the end of last year and this year when eva i drink i feel like crap ??
                              owell there alway party pills , let me guess there bad 4 me 2 ?
                              Yes, party pills are very bad for your heart.

                              Margie, I am going to be real straight with you.

                              You have a serious heart condition, if you do any drugs or take party pills or drink too much you could die.
                              Or at the very least you could do irreversible damage to your heart.

                              I am sorry dear, I know this is not what you want to hear, but it is the truth.

                              I know, I was young once too, but you must take this seriously.
                              Maybe try to find something that you are passionate about and do that instead of partying.

                              Your friends do not understand your the severity of your heart condition.
                              Be careful dear, we do not want anything bad to happen to you.

                              Take care,
                              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

                              Today's Birthdays

                              Collapse

                              Working...
                              X