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


No announcement yet.

Should Patients Be Advised?


About the Author


Lisa Salberg Find out more about Lisa Salberg
This is a sticky topic.
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Re: Should Patients Be Advised?

    Ok, I have been away from this site for a couple of years because my ICD had been working great and recently cam back on a few times due to some symptoms that are now minimized with an increase in meds. I got the device, a medtronic, and it seems to be doing the job of pacing my heart under stress as my most recent echo showed the gradient to be greatly improved. The doctor can barely hear an murmur audibly. I know my leads have been recalled but am not aware of a problem with the device. I would expect that the doctor and I would be notified of a problem.


    • #17
      Re: notification

      I think both patient and doctor should be notified. My last AICD had a problem where the battery would stick in one place and drain and drain and not move the indicator. Thankfully my doctor knew about it and checked my device and found it was listed as one of the problem ones and implanted a new one.
      Sept 2000 - AICD Implanted.
      Sept 2000 - 1st Alcohol Septal Ablation @ Scripps.
      Enlarged part turned to mush.
      April 2001 - Attempted 2nd Alcohol Ablation. Failed
      April 2002 - Completion of 2nd Alcohol Ablation.
      April 2002 - Blood Clot 1 week after surgery. Placed on Coumadin.
      April 2003 - Bad reaction to Coumadin-4 Units Transfused & Vitamin K.
      Sept 2004 & Dec 2009 - Replacement AICD Implanted.

      Meds: Verapamil ER, Norpace, Lisinopril, Aldactone, Buspar, Celexa, Risperdal.


      • #18
        Re: notification

        I can't understand only notifying the doctor of a recall. What if that person moved or changed doctors in that time? I think both should be advised. In fact, I think they should issue a press release for the media to pick up and report on the recall like they do with cars and sometimes products for babies.
        Last edited by PattyT; 05-27-2011, 10:42 AM.
        Patty Thomas -
        My mother has HCM.
        I'm currently looking at Medical Alert Systems for her.


        • #19
          Re: notification


          Patients should be told of ALL possibilities. The patient needs to know what could happen, even if it is extremely rare, to make an informed decision.

          Before I got my first defibrillator within the past week, I spent a long time talking with the surgeon face-to-face. I needed to know about all possibilities, because I was one of those 1 in 10,000 statistics years ago having a (different) heart-procedure-gone-wrong as a child and still suffer from permanent effects.

          Life-altering damage should not be left as a surprise.


          • #20
            Re: Should Patients Be Advised?

            Friends, Family and Church are also good sources of financial help if you need it.


            • #21
              Re: Should Patients Be Advised?

              I think the patient and doctor should be notified. Face it, the device is INSIDE me... I am intelligent and capable of taking appropriate steps to assess my options, the first of which would be to contact my COE. I think I have a right to know.
              Diagnosed at age 53 in April 2010 (after having been
              "cleared" several times)
              Into running & cycling - cleared to continue at mild to
              moderate level
              Extensive family history
              Lost my mom, aunt and nephew to SCD
              St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"


              • #22
                Re: Should Patients Be Advised?

                It's been a long time since I've been here ! Nice to see some familiar faces. I feel that I have done everything I was supposed to do as far as dealing with HCM. Including second and third opinions even when it meant traveling hundreds of miles to get "the best" in the field. I never missed an appointment. On Dec. 27th, 2013, I went into cardiac arrest. The ICD I had implanted FAILED. It did nothing. Luckily, there were 2 Doctors shopping in the store. They worked on me for 25 minutes waiting for the squad to arrive. When they arrived, they shocked me 4 times and took me to a Trauma 4 Hospital. There they put me "on ice" for 3 days and I stayed in the Hospital for weeks. The Drs. replaced my ICD with a "more reliable" brand. Even though my family and myself have went through **** and I won't be the same, I am grateful to be alive. Had I got a heads up on this worthless device, um yea, I would have had it replaced immediately.


                • #23
                  Re: Should Patients Be Advised?

                  Good to hear from you Maria, but not good to hear the story. I'm so sorry to hear what you endured, but I'm glad you and those 2 doctors were in the right place at the right time. How is the new ICD functioning for you?
                  Onward and Upward !

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


                  • #24
                    Re: Should Patients Be Advised?

                    Hi Linda ! I guess it's good ? I won't know until I need it again so I hope I have a good one this time ! And yes, I'm certainly glad that Doctors like the Pottery Barn !!!


                    Today's Birthdays


                    There are no members with birthdays today.