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HRS meeting in Washington DC

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Lisa Salberg Find out more about Lisa Salberg
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  • HRS meeting in Washington DC

    In one hour I am off to Washington to participate in the HRS/FDA conference on ICD's. It is going to be a very interesting day on Friday and I suggest you all watch the NYTimes, Wall St. Journal and Star Tribune to name a few for coverage of this event.

    I have given a great deal of thought and energy to this meeting and I do hope to not only bring the patients point of view into the room but I also hope to bring the spirit of those lost to device failures with me. I will post my comments after the meeting for you to see. I have been given 5-6 minutes to speak then respond to questions so I have had to chose my words carefully and pack a strong punch in a minimal amount of time.

    Wish US luck - as I feel you will all be with me while I speak.

    Best to all!
    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)

  • #2
    GO LISA -- YOU'LL BE GREAT!!
    And THANK YOU, TOO!!

    Comment


    • #3
      I can hardly wait to see the reports!

      Reenie
      Reenie

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

      Comment


      • #4
        Good luck, and have a safe trip.
        Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

        Comment


        • #5
          Lisa i will be looking for the papers be safe

          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
            Lisa
            I know you will do well. You have so much knowledge and know of ways to put that knowledge into words.

            I'll be waiting to read your report.
            Esther

            Comment


            • #7
              Lisa,

              I am thinking of you and I know you will do great with your speech and with any answers you give.

              Thank you for being our voice.

              I look forward to reading your comments afterwards.


              Hugs

              Eve
              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.

              Comment


              • #8
                Thank you, Lisa, for going to this meeting, and putting your energy into something that is so important to us.

                Thank you, also, for bringing the patient's point-of-view to the meeting. Being a patient with an ICD, I can tell you that life is filled with questions and uncertainties.

                I just found out that I need my device replaced for the battery. I just had surgery last year for a lead replacement, and now am looking at the surgery for the replacement.

                While it's nobody's fault that this is happening so soon on the heals of the last surgery, it's frustrating, all the same. Time off from work, the problems this causes to your life, etc.

                It's good for all the medical people there to have a patient's voice reminding them that our lives go on, we have life, and work and other considerations that complicate things from our perspective, too.

                You go girl! Good luck at the meeting.

                Debbie

                Comment


                • #9
                  My thoughts and prayers are with you all day today! May the right words and right people be in the room with you during your time to talk. May the strength and spirit of all those lost form ICD failure be next to you throughout the day! God willing, you will have a wonderful audience and make a huge impact for all current and future the patients of ICD implant.

                  Blessings, peace and patience be with you always,
                  Sharon

                  Comment


                  • #10
                    Once again, we can all thank Lisa and be grateful she is there to make our voices heard. The meeting was quite an eye-opener. Industry, the medical community, the FDA and the patient community were well represented. All brought forth information and details that were important for everyone of each background to be aware of. I'm sure Lisa will post a report when she has caught up with a bit of rest. I drove from Maryland, just north of DC, she had a train trip from NJ.

                    I felt a true sense of cooperative effort in trying to identify and define the problems and begin a plan for resolving issues. As you can all imagine, this is just the start, but the necessary players are in the game. Each entity has it's own difficulties and had the opportunity to express them. Industry, the FDA, and the medical community were very interested and impressed with the patient input. Lisa was on the final panel of the day. The last 2 panels both included patients and generated possibly the greatest discussion. Lisa's presentation had great impact and opened quite a few eyes to problems - living life dependent on technology, financial issues related to device replacement, trust issues, doctor/patient relationships, "what patients want to know", and "who they want to hear it from", etc. I'll let her fill you in. She was still going strong with individual meetings when I left.

                    Lisa - hope you get home at a decent hour and have a good nite's rest! Congratulations on a job well done!

                    Linda

                    Comment


                    • #11
                      Linda ,

                      Thank you for the update , sounds like Lisa did as usual A +++ work on everyones behalf. I am happy you were able to be there also .

                      It is so important that we have such a great spokesperson and advocate. Yesterday I was in Boston having my cardiac eval for surgery and saw Dr. Maron and Dr Udelson . They are so pleased with all that Lisa does to help in the education and assistance of those with HCM and those with devices. Her advocacy for all on the issues of devices is astounding to say the least. The fact that she does everything she does inspite of dealing personally with her own HCM issues shows that she is a true humanitarian. She is the shining light we all need on those dark days , when we have them and the bright light that keeps us moving forward in a positive and progressive manner.

                      Dr. Udelson pointed out that inspite of all the saddness and problems with regards to the Guidant stories, good things have started to happen . He is so right and it was great to here it from his expert perspective. He said all the articles have been scarey for patients but having real people to identify with has made a lot of people feel better and able to come to decisions about their devices that were in question. He commented that the article that I was in, in June gave many of his patients the ability to feel less stressed about what they were facing for themselves. He said they identified with another patients human qualities, strength, and courage to move forward with the best decision for themselves . It was so nice to hear that an anxiety provoking issue helped so many. If not for Lisa , I would never have done that interview and been able to reach out and help others.

                      I strongly believe that , so much more positive is going to happen as a result of Lisa speaking in Washington. I cannot wait to read the news reports that will be generated. Fathom how many other peoples eyes will be opened as they hear about the session and how they will begin to formulate their opinion and support.

                      Thank you Lisa!!!

                      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


                      • #12
                        So many good things will come of this. Better clarification in communication will help to remove much of the fear that comes with reading these things in the newspaper. Better discussions about possible complications, risks, and how they will be handled prior to implantation will help. Also, words in medical context don't mean the same or have the same high level of seriousness in the everyday use for the general public. Although this mtg was geared towards pacers and ICD's, makers of other implantable devices were well represented and will be watching closely for guides.

                        We, here on the Message Board, just say "Lisa" and everyone knows who she is. We don't need to say a last name. Let's keep this our little secret, because we don't want her to get a swelled head or anything like that, but increasingly, we are hearing "Lisa" at these mtgs also. We just don't hear Lisa Salberg or Mrs. Salberg very often.

                        Linda

                        Comment


                        • #13
                          Hi Linda,
                          Glad to see that you were there to support our leader, hear the presentations and panel discussions, and share your views with us on the message board.

                          I hope Lisa has made it home okay! Let us all know how the meetings went from your perspective, Lisa! We are here to support you in every opportunity.

                          Warmest regards,
                          Sharon

                          Comment


                          • #14
                            WOW you guys have to stop this I am going to get a swelled head! Really thank you for all of your kind words and good wishes - they mean the world to me!!!

                            As we are all family here I will give you all the details -

                            Thursday I arrived in DC a little early (don't think that will ever happen again!) and attended the pre-meeting meeting. During this meeting we were informed about the new data evaluated by the FDA that shows pacemakers have improved in quality and defibs have increased in explants due to malfunctions - in short we were all in shock and felt as if the wind was taken out of our sails. Questions were endless - why are we hearing this NOW? Why didn't we know before? What does this really mean? and on and on. The reality is this data needs a great deal more work to know what it really means. This topic needs a great deal more work and I will comment further shortly.

                            Thursday evening I enjoyed a nice light dinner with Richard Brown from the Sudden Cardiac Arrest Survivor Network. We discussed our upcoming talks and enjoyed the evening. After a few other meetings I went to my room for a much needed night of sleep - well that's what I hoped for anyway. I woke up at 12:30 with severe food poisoning! I was up for about 6 hours - lets just say VERY sick -so much so I had to call security to bring gator-aid - they wanted to send me to the hospital But I said not unless I get worse - and thankfully by about 5:00am I was feeling a bit better and got an hour of sleep - then off to the meeting! I think the guilty item was a shrimp on the pizza I had for dinner.

                            Needless to say I was not on top of my game in the morning - but it was time to do it!

                            I will be sending an email to all about the details of the meeting and a portion of my prepared statement. The most important contribution I believe I made to the meeting was to bring up the fact that we were all there because there was a problem - and we all knew it and this was the time to make real changes. I suggested that any changes in the laws that are needed be done so in the name of Joshua Oukrup the young man who died, from a faulty ICD that was implanted due to his HCM. Interestingly as I said this I noted that several Guidant exec. looked directly down and the table upon hearing this name. My point of mentioning Josh was to make sure nobody ever forgets his ultimate contribution to our lives. I also wanted to make sure he was "in the room" in some way - I had discussed this with his father and brother before doing this and they thought Josh would have liked it - so I had to do it.

                            I talked about living with a device and trusting IT more then any other person, institution or appliance in your life. I spoke of the need for trust. I brought up the financial concerns - I also thanked the entire meeting for being truly open to hearing from patients and working together in an extremely open and honest way.

                            I have high hopes for the next step in this important process.

                            More later,
                            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


                            • #15
                              Oh Lisa

                              I hope you are feeling better today and i think I would not order anymore from that place, I hope you are well Hydrated now and stay that way, I do remember myself having food poisoning oh that is something you don't forget it, you swear you're going to die but seem to live through it some how well you take care and i'm very glad you were there to represent us

                              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

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