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Should Patients Be Advised?

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Lisa Salberg Find out more about Lisa Salberg
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  • Should Patients Be Advised?

    I would like to poll our membership. Please feel free to reply even if you do not currently have an implantable device.
    150
    Yes, I the patient should be advised
    35.33%
    53
    No, the Patients Doctor should be advised
    0.67%
    1
    Both patient and doctor should be advised
    64.00%
    96
    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)

  • #2
    I voted that the doctors need to be advised of problems. I feel if the patient is notified directly there might be some room for undue panic. The doctor can notify the patient and help them select a good treatment plan for the individual. However, that said, I'm not against notifying the patient IF the doctor is notified as well.

    Reenie
    Reenie

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

    Comment


    • #3
      Well, I think both should be advised about the situation if it is one that could cause life=thretening complications. Frankly, I'm at the point of not having full trust in my doctors in making the right decision. Many of you know my issues. I will let it rest at that. But, I knew about this whole guidant thing before my cardio knew. That was a little unnerving to say the least. I also read the letter that my doctors recieved and it was nothing like the NY Times report! I'm 100% dependent on this device for pacing as well.

      My local cardio says I have absolutly nothing to worry about. But, I've got a call in to Dr. Martin Maron to see his opinion on the whole deal. I just hope I don't have to go back up to Boston. I don't have the money to fly!

      By the way the poll was not working for me!

      Mary S.

      Comment


      • #4
        I believe the patient should be notified. The doctor also , but the patient has the devise , a doctor could be away and the letter could get filed or put in the pile. It was my call to my EP that got things going in the first place . She had not recieved a letter and had only heard what others had read in the paper as had I . We both got going on it. She sent messages to me that I should continue to check check on things and let her know and we would talk as soon as she had fully reviewed the material. She likes how I get to investigating things and that I am very proactive in my health management. Too bad not all doctors feel the same.
        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


        • #5
          Pam

          That is very true I too called my doctor and got things rolling, but no the patient has the right to know along with the doctor

          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

          Comment


          • #6
            Originally posted by Reenie
            I voted that the doctors need to be advised of problems. I feel if the patient is notified directly there might be some room for undue panic. The doctor can notify the patient and help them select a good treatment plan for the individual. However, that said, I'm not against notifying the patient IF the doctor is notified as well.

            Reenie
            I agree with Reenie ... The doctor who order the ICD should be in communication with the manufacturer and decide what is best for the patient.
            Thanks, Tim
            Forum Administrator

            Comment


            • #7
              notification

              I vote that the doctor should be the one advised. These companies should also be under legal requirement to make a public disclosure within days of discovering a problem.

              Comment


              • #8
                food for thought

                In some cases patients move from one area and find a new doctor. In these cases medical records may be delayed in the process. If there is a recall or advisory during this time a patient may not get timely notification if the notice is only sent to the doctor. This has happened in the past and should be part of the thought process developing new channels of communication regarding recalls.
                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


                • #9
                  Yes , This was a concern as you know that I voiced. My Ep now, was a fellow at the time that I first met her. She was the one who moved and when I began to see her at her new location she was no longer a fellow. She had to have registered the changes with Guidant because her new location made excellent contact with me. I recieved a letter , a registered letter and 4 phone calls from different individuals there. Since I never moved, I wonder why Guidant themselves never made any attempt to reach me. A reporter for the Boston Globe wanted to know if I had ever recieved a notice from a car recall . Big yes 3 times on a car that I bought used... They had no problem sending me a postcard.

                  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


                  • #10
                    I've not even received a letter about the recall yet. My local cardiologist said that because mine was implanted in Boston. So apparently the Boston guys thought the Florida guys were going to do it and the Florida guys thought Boston was going to do it. So, this is why I think the patient should know.

                    Mary S.

                    Comment


                    • #11
                      Am I missing something here? I can't get the poll to take my answer either.

                      I think both should be notified. The patient can be notified to contact their doctor about the situation. The company should be giving more detailed info to the doctor, but the patient should be made aware to provide a double check and make sure nothing slips thru the cracks.

                      Linda

                      Comment


                      • #12
                        Re: Should Patients Be Advised?

                        Of course patients should be advised, after all it is their body and life. Yes, doctors should be informed also, as they will be doing the diagnosis and explanations.
                        Bottom line is patients have the right to be informed regarding all of their health care issues.
                        That said some patients may not wish to be the one informed. So, maybe there could be an option for those patients that when the device is implanted they could choose to have only their doctors be informed. For some it may not be about being informed but about having the choice to be informed. Options are important to people, especially people with a chronic illness. (Don't you think?)

                        Well, that's my 2 cents worth. Have a good day.
                        Patricia

                        Comment


                        • #13
                          Re: Should Patients Be Advised?

                          HCMA -

                          Yes!!! Yes! I believe that both the Dr and the patient should be notified. After living through the Medtronic SuperFidelis lead scare, my 9 y.o. son received an inappropriate shock 4 days after the official recall, both need to be informed. If both are notified, then there may not be a "lag time" regarding the information for our use. Also, these devices can save lives, but sadly we know all too well that the opposite can happen.

                          Keep up the good work HCMA. You are making a difference!

                          Eric

                          Comment


                          • #14
                            Re: Should Patients Be Advised?

                            How paternalistic and ridiculous is it to only tell the doctor? Um, completely!

                            It is my body and the manufacturer has an ethical obligation to inform me of the potential hazards to my LIFE.

                            end of story.

                            Comment


                            • #15
                              Re: Should Patients Be Advised?

                              Lord, yes. Both patient and Dr. should be advised. I'd be outraged if I wasn't.

                              As Patricia points out, it's good for people to have choices, so if some people want to opt out of the information, that's fine. But unless a patient has affirmatively opted out, every affected person has an absolute right to know.

                              Based on past experience with local docs and cardios, I don't trust them to keep me informed. I want it straight from the manufacturer as soon as it's known. Then I can call the doc and make a plan.


                              For some reason, the web sticky isn't taking any more poll votes.
                              Diagnosed (w/obstruction) 2003 at 39
                              Alcohol Septal Ablation Feb. 2006
                              Myectomy April 2007 Cleveland
                              Pacemaker dependent (no ICD)
                              Thankful and doing fine

                              Comment

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