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.

New To The HCMA Forum

Collapse

About the Author

Collapse

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

  • New To The HCMA Forum

    Hello To All,

    I would like to take this time to introduce myself...my name is Doug and I was diagnosed with Hypertensive Obstructive Cardiompyopathy in March of this year...prior to this I had an pacemaker implanted due to my Bradycardia. Three days ago my pacemaker was removed and now have an ICD/Pacemaker....and the heart is paced at 100 percent.

    The disease has beed very depressing and alot of anxiety has grown especially with the new implant...The doctor had tested it a few times and the pain was terrible to say the least. I do not look forward to the next shock episodes...alot of anxiety about that.

    Many people say that one passes out when you are shocked and others say different...I guess it is different for everyone but don't look forward to that at all.

    I do not know much about the disease process to end stage but I have learned alot through this forum.

    It is to my understanding that I cannot be around alot of machines or tools that carry an electromagnetic current...and wonder if there are any people that can give me examples of things like this to avoid....I am a bit into the dark on this stuff. I am a Disabled Veteran, and have been using my woodworking and lapidary to suppliments my disability...just purchased some new saws and power tools a couple weeks ago....and now I guess they cannot be used. Any ideas out there....Is this true....What can happen when one uses this things.

    I am 43 years old and live in Wichita, Kansas. I am married with 6 children...ages 21 thru 7. This has been very hard on the family as well.

    If there is anyone that would like to send me your thoughts I would definitely appreciate the emails. My address is glasseagle at hotmail dot com. Hope to hear from someone.

    Respectfully,

    Douglas
    Disabled Native American Veteran
    United States Air Force
    Glasseagle

  • #2
    Welcome to the Forum Doug! Having an ICD takes some getting used to. I have only had mine for just over three months and I am just now starting to feel comfortable with it. To be honest the ICD in and of itself is not that debilitating. Since you are paced 100% of the time I would call the company that makes your device and ask them what would interfere with the ICD. My device is made by Medtronic and they were very easy to get a hold of... and very helpful. I am a musician by trade so I was very concerned about being around audio equipment (particularly speakers). Well, it turns out that I need to stay a least 6 inches away from the speaker. So, I can still play; however I am now excused from having to carry speakers...that is not a bad thing. Next, I would talk to your doctor and ask him/her what restrictions you should have based on your circumstances. Those of us with HCMA are all a little different and some of us may have different restrictions then others.
    Pace Bene,
    Matt

    Diagnosed with HOCM 2003, ICD Implant on 3-3-05, Extended Myectomy with a Mitral Valve Plictation at St. Luke's in NY on 9-27-05

    Comment


    • #3
      Hi Doug.

      Welcome to the family. Sorry you find yourself part of this group on the one hand, but glad to know you have this supportive community to turn to on the other.

      Elmatt is right in saying you should contact the manufacturer of your device. My device is also made by Medtronic and they are easy to get a hold of and very accommodating with information. I received a small booklet with my device that listed a whole range of machinery I am not supposed to get close to. For you, being 100% paced, that is especially important. I am sure they would supply such a list for you as well. Below is a link to the Medtronic website that list several precautions.

      Medtronic Site

      Doug, I wish you the best as you continue to adjust to this new reality. Please make sure all your children and siblings get tested for HCM. The genetic link is very strong. I will be praying for you.

      Peace,

      Leon
      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness

      Comment


      • #4
        Doug,
        Call the HCMA office and we can get you out more information. The number is at the bottom of the page.

        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


        • #5
          Hi Douglas. Welcome. My husband is also a USAF retired disabled vet. He's 40 and his disability is due to his HCM. He has an ICD also. The way I understand the Medtronic guidelines on not using power tools such as saws and drills is that it may be unsafe if you have an episode if you have a shock while using the equipment. I think the electrical currents aren't as big a problem if you keep it away from the device. If you have any questions please write.

          Reenie
          Reenie

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

          Comment


          • #6
            Hello Douglas,
            Welcome to the message board and our community! This place is full of a wealth of information and packed full of wonderful and supportive people! You are very safe here!

            I am sorry that you are experiencing so much turmoil in the last few months with your diagnosis. I wish you well and hope that through our support and the information you glean from us you will find the answers and the direction you need to improve your quality of life.

            I used to live in Wichita and come to Kansas on a regular basis - usually up north to Manhattan, KS (home of the Wildcats). My son was the football player that died almost 5 years ago from undiagnosed HCM. Anthony's father, Allen, still lives in Wichita. I sent your information to him (he is in school and doesn't get on the message board as often as he used to).

            The organization that I formed after my son died has created an opportunity of education and awareness of HCM through FREE cardiac screenings for young people. Check out my website link below. We do our screenings in Kansas, Arizona, and Nevada. Our next screening in Manhattan, KS will be Sunday, September 18th. You are more than welcome to make the trek up north to have your children screened for FREE.

            What I have learn from this site, my friends and supporters and the lady that started it all, Lisa Salberg, that with early detection and managed care most people can live a long productive life - even with HCM. You have that opportunity.

            My prayers are with you and your family. Be well and be educated on all you can for this condition has it's mysteries, and rewards - we found each other!

            Warmest Regards,
            Sharon Bates

            www.AnthonyBates.org

            Comment


            • #7
              Hello Douglas,

              Being told I have HOCM last year was quite a scare. I remember all the emotions my wife and I went through. My local doctors were not comforting. Boy, did I have questions and I couldn’t get answers. The most common answer was “we don’t know”.

              A few weeks later I found this web sight. The people here changed my life (in a good way). What a comfort! The people here are great. I hope finding us brings you the same comfort. Living with HCM is not so bad.

              Lisa is wonderful and highly respected by the top HCM doctors in the country.
              “Call Lisa” probably the 2 most used words on this message board but probably the 2 most important word.

              We are all here for you,
              Stuart
              Cleveland Myectomy Club
              August 31, 2004

              Comment

              Today's Birthdays

              Collapse

              Working...
              X