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Should Patients Be Advised?

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Lisa Salberg Find out more about Lisa Salberg
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  • MariaB
    replied
    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 !!!

    Leave a comment:


  • LindaSo
    replied
    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?

    Leave a comment:


  • MariaB
    replied
    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.
    peace
    MariaB

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  • Susank
    replied
    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.

    Leave a comment:


  • terryberg
    replied
    Re: Should Patients Be Advised?

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

    Leave a comment:


  • pickaback
    replied
    Re: notification

    Absolutely!

    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.

    Leave a comment:


  • PattyT
    replied
    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.

    Leave a comment:


  • Jamie
    replied
    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.

    Leave a comment:


  • Darlene
    replied
    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.

    Leave a comment:


  • Bruce42
    replied
    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.

    Leave a comment:


  • Sarah
    replied
    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.

    Leave a comment:


  • Eric Nelson
    replied
    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

    Leave a comment:


  • Patricia-ORS
    replied
    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

    Leave a comment:


  • Linda
    replied
    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

    Leave a comment:


  • Toogoofy317
    replied
    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.

    Leave a comment:

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