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.

DDD pacing

Collapse

About the Author

Collapse

Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • DDD pacing

    Typically DDD pacing is for obstructions right? I've also heard that it is maybe not a good option for HCMers too. I know the NIH studies were considered flawed because of unethical practices but I do no know to what degree.

    Anyhow, when I was in the hospital with my vast array of ailments the most outstanding was the continuous passing out episodes. My blood pressure was very unstable dropping to 70/30 at times. So I saw a new cardiologist who is also an EP. My old cardiologist gave up on me and fired me as a patient (funny, I thought I paid him). He told me all of this was in my head.

    As an effort to keep my BP on the semi stable side he put me on 100% pacing, compression stockings, and salt tablets to keep my blood pressure above 90. Is this the right thing to be doing at this point. I had the information faxed to Dr. maron but have heard nothing as of yet. Guess I will give him a call.

    Mary S.

  • #2
    Re: DDD pacing

    Mary - Are you sure you are being DDD paced and not some other type of pacing? I would clarify that, but even if you are being DDD paced, maybe its what you need.

    I know that I am demand paced whenever my HR falls below 60, in part to keep my blood pressure up. I take a high dose of beta blockers now, but before my ICD I couldn't even tolerate a baby dose without my blood pressure tanking. The pacing has definitely helped my blood pressure stay up. My blood pressure had been known to drop to 50/30 before.

    There are also meds that can help. I used to take ibuprofen (advil) to raise my BP, and now I take one aspirin daily. There is also florinef that they give to people sometimes.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

    Comment


    • #3
      Re: DDD pacing

      There are many reasons to pace that are reasonable. There are long term issues with DDD pacing if you are not REALLY in need of it.

      The data that came out of the NIH re DDD pacing is so flawed it really should be withdrawn from the lituratre. I was part of the study as was my sister, I know how the study was really done and how many people have lost their lives - enough said.

      There are other centers who had published on the matter - look at there data.

      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
        Re: DDD pacing

        Well,

        I talked to Dr. Maron about the DDD pacing and he is in agreement. The hospital did fax him all of the details. We are going to hold off on any cardiac meds due to the hypotension.

        I've just got to get something figured out. Work is getting worried that it may be to hard on me. In fact I have to go in on Monday and get another fit for duty physical. I'm so worried about that. I don't know what I would do if the doctor did not find me fit to do the job. Does this mean I'll get fired and lose all of my benefits?

        I just wish I knew what to do. If I lose this job well, don't even want to think about the consequences.

        Mary

        Comment


        • #5
          Re: DDD pacing

          Mary,
          If you are not fit for duty, yes the employer may be able to terminate your employment. There are some laws that offer limited protection, but I do not know that in FL you have the same laws that NJ and NY have.

          In short we need to get you up and running again.

          take care,
          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: DDD pacing

            Mary,
            My, and I am sure many others, will have a very specific prayer for you that come Monday you will be fit for duty!
            Rhoda

            Comment


            • #7
              Re: DDD pacing

              Mary, I'm pulling for ya!

              Reenie
              Reenie

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

              Comment

              Today's Birthdays

              Collapse

              There are no members with birthdays today.

              Working...
              X