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Owner of One of the flawed AICDS

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Owner of One of the flawed AICDS

    Just an update,

    My Ep called me 2 times this am , she is rather perturbed with the manufacturer of my devise( 1861 , implanted in 2000) as I would expect her to be. She said BIG definite, she is making plans to change out my devise. She felt it was very presumptuious for a manufacturer of a devise to feel or state from their standpoint that individuals who have devises due to their high risk for SCD are not at risk of SCD with a devise known to be flawed and have already led to malfunctioning. Helloooo someone died already with the malfunctioning devise, does it have to be more then one poor unfortunate individual???. Until the switch live a quiet life ( as usual ) and be around those who know me and about me. So that is the plan , hopefully to occur before the end of the month.

    I am sure others will be hearing of a plan that is in their best interest as well.

    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

  • #2
    Pam, I'm sorry it's working out that you need another surgery soon but I'm really glad your EP is on top of this. Take care and keep us posted.

    Reenie
    Reenie

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

    Comment


    • #3
      Well, my local cardiologist aren't going to do a darn thing about it. I honestly just don't feel comfortable about it.I depend on this device 100% with pacing. But, not sure what to do! I'm already pretty PO'd with them this week. I saw the Nurse Practitioner last week and told them I only had six days left of my Duragesic patch and that I needed a refill. She told me to come in today and the cardio would be there to write the script for the narcotic. I get there today and He's out of the Blooming Country. I asked them what I was supposed to do because I only have a couple days left on this patch. She told me to go to my primary. I have an appointment for tomorrow but I know she isn't going to refill it. I've already tried in the past and she said no. I just want to choke somebody right now!


      Mary S.

      Comment


      • #4
        Mary,

        May I suggest that you contact your EP regarding your devise and /or the Dr or institution where it was implanted. My EP had me do that to ensure that all were in line with the same communication. She also made contact as she had formerly worked at the Boston Hospital where I was implanted.

        Be persistant.

        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


        • #5
          Change Out

          Pam I am sorry to hear you need a change out for their mess up!! I live and work in the backyard of Guidant , Medtronic and St Judes. YEP they are all here...and I worked as an EP nurse with the Clinic that did trials for them. I chose Guidant when it came time for my implant .. I was and still remain friends with the reps from the respective companies.... The young man that died as a result was from this area also... I was so upset and angry when I found out that they did this with 3 years of knowing under their belt. The clinic has run through the entire list of Guident patients and plans to replace all the devices of that model number and had a list of nearly 150 to call. The price tag of a human life>
          Ag

          Comment


          • #6
            How do you know exactly what model is the one recalled. I fall righ in the fuzzy area. Mine is the model specefied and was implanted on NOV 1,2002. Right on the boarderline. I've been trying constantly to get a hold of Dr. Maron but to no avail!

            Mary S.

            Comment


            • #7
              Devices

              It is the Ventak Prizm 2 model 1861 that has the problem. It was listed in the article that Lisa listed. Look on your card and the model number and name are listed.
              Ag

              Comment


              • #8
                I have recieved many calls from the press on device issues over the past 2 weeks. If anyone is interested in speaking to members of the press just drop me a note and I will make sure your name gets to the reports. If you would like more information on a particular reporter or the angle they are taking on the piece, call the office and we can discuss it.

                Informing the public is an important part of what we do...your help is appreciated.

                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


                • #9
                  ICD replacement

                  My son Chris is 15 and he also needs to have his ICD replaced. He is not happy and even told the doctor he wasn't doing it . He has since changed his mind but now the Company feels that his can wait because he has never had an irregular rythym or any other problem since he had it put in.


                  Karen
                  Karen Cicconetti
                  Heart Transplant 1998
                  Don\'t take your organs to heaven
                  Heaven knows we need them here

                  Comment


                  • #10
                    Hi All-

                    Alan's device is one of the ones in question. He has an appointment at Geisinger Medical Center in Danville, PA on June 30 to get it replaced. He is scared to death and this along with my father being very ill has him quite stressed at this point. Neither of us can understand how the company has gone 3 1/2 years knowing that these could be defective and not doing anything, and why they even implanted them after they knew.

                    Anyway, I have a call in to the Guidant rep for the area and he hasn't called back - next week I'll try calling every day. We were told last week that since his device is over 3 years old (he had it installed on May 28, 2002), that Guidant would only reimburse our insurance company $6000.00-$8,000.00 of the cost of the replacement (under 3 years, they would have covered the whole cost???) Well, this week we found out that they'll cover the cost of the device but not the medical costs - at least that's something!!

                    Lisa, we'll talk to the media - I'd like to get this story out as much as possible. Take care all!!

                    Ange

                    Comment


                    • #11
                      Originally posted by Heartmans Wife
                      .......Well, this week we found out that they'll cover the cost of the device but not the medical costs - at least that's something!!
                      ..............
                      Ange
                      Oh great, like the ICD is going to do him any good without being implanted...this all makes me angry and I don't even have an ICD--hard to even imagine what it must be like to be one of the folks with the defective ICD's. Good luck, Lisa Inman

                      Comment


                      • #12
                        I have the guidant device model 1861. This really upsets me and I am thinking of taking legal action. The mayo clinic has not been responsive to my questions or calls at all and it really pisses me off. Guidant knew about this defect for 3 years and didn't say anything? I think that is very irresponsible.

                        Comment


                        • #13
                          Well,

                          I'm the proud owner of one of the defective devices! But, when I talked to the EP nurse in Boston today said I was on the fuzzy side. He said that it may be more harmful to re-implant but said if I was pacer dependent or had several shocks then it should be changed out. I told him I was paced 100% but he said he didn't think I would need an new one because I have a rhythm without the pacer.

                          I have to get mine checked out tomorrow anyway. I had a freaking accident today on the turnpike and the seatbealt sits right on the device! OWWWW! I sat in my car for fifteen minutes wrecked an no one even stopped. I nursed my car to my docs office where she took care of me. She felt so bad for me. While I was getting all the x-rays and stuff she ran out to the store and suprised me with a birthday cake. Now that is a compassionate doc!

                          If it weren't for her today I think I would have thrown in the towel. I mean really what else can go wrong!

                          Mary S.

                          Comment


                          • #14
                            I am going to "get the planned date for rmoval" when I see my EP Thurs. I got another call today alerting me to the possible problem I could have with my devise if I need it. I am wondering now if some of the voltage problems thay have seen in my readouts could be from the devise . At the time they could not figure what was happening and have just been monitoring it for increases. I have had a couple about 3-4 weird sensations, like an electrical impulse like when you get zapped by a plug ( small shock) in my left chest. It happened actually before the news release. It made me briefly yelp out loud.

                            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


                            • #15
                              Making my choice of getting an AICD real hard. Very hard. ......

                              Comment

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