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Is spelling the name right…enough? Without a Trace

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  • Is spelling the name right…enough? Without a Trace

    I have been a member of this group for more then a year and a half. In that time, it has been my good fortune to have many heart to heart talks about HCM with several members including some life changing conversations with our president, Lisa.
    During this time I have come to realize that the most difficult challenge that we face as HCM patients is the pervasive ignorance of this condition by the general public, our relatives, and worst of all, the people who should know better, our doctors.
    This is why Lisa signs every post with “Knowledge is Power”. It is the responsibility of this organization and more importantly, the people who utilize this message board to educate people about this condition, one person, one cousin, one child, and one cardiologist, at a time.
    Although I fantasize about one day being able to put together a Super Bowl Ad about HCM, I realize that the grass root approach of people like Sharon Bates along with Lisa’s efforts within the ACC, are our best current strategies.
    But recently, a fictional character, Vivian, an investigator on the CBS show, Without a Trace, was diagnosed with Hypertrophic Cardiomyopathy. Vivian is played by Academy Award nominated actress, Marianne Jean-Baptiste.
    When the 61st episode of this series aired a few weeks ago, roughly 15 million people heard the term “Hypertrophic Cardiomyopathy”. That is probably more then all the people who had heard that term put together, in the 10 years this organization has existed.
    Television is still a powerful marketing tool, and there is part of me that is joyful that people are first learning about our condition through a fictional character who does not have to suffer through some of our real life hardships. At the same time, I am worried as well, because there is potential here for this awareness to do more harm then good.
    Before I continue, I need to point out that I have not seen more then a few minutes of this program. Last week, I caught the end where the character Vivian tells her Boss that it would be all right if he has to replace her because of her medical problems (he tells her he won’t).
    There are rumors on the “Without a Trace” fan message boards that the writers are using this as a device to write the character off the show. This seems silly because if the writers wanted to kill off a character, they could easily have found a condition with a much higher mortality rate (even if they’re trying to be “creative”).
    I’m guessing that either a writer or a producer has close personal ties with an HCM patient. It certainly sounds better then if they were just big fans of Reggie Lewis.
    Here is a link to a brief description of what is going on at the show.
    http://entertainment.myway.com/celeb...31_2005_3.html
    So here are some of my concerns.
    • Vivian is diagnosed with HCM and then “collapses on the side of the road”. "By the end of the season, she'll be angling toward surgery and potentially a life-and-death situation."
    Now, it is not impossible for an Obstructive HCM patient to collapse, but it is much more likely to occur with a patient on the EP side of HCM. And if Vivian is having EP issues, what surgery is she heading for? Putting in an ICD should not be a life or death situation. Will she need a Maze? A transplant?
    • It does not seem like the show will address Vivian’s drug therapy. Ok, I know its Hollywood, but this could give the public the impression that drug treatment of HCM is limited in scope and unsuccessful.
    • According to my wife, they used the term “IHSS” last week. Pet peeve of mine, as well as others on this board.
    • I’m wondering if they are consulting with a cardiologist. In my time on these boards, I have never read about a reference to a HCM specialist in Los Angeles. Most Californians are told to head to the Bay Area where an ex-Mayo Clinic doctor set up shop a few years ago. My fear is that the show is getting their information from a cardiologist who knows HCM they way most cardiologists know HCM. They studied it for a few days back in med school. Wouldn’t it be nice if the show gave Barry Maron a call? Heck, they could write a small part for Marty Maron, since he has the Hollywood looks.
    • If they’re putting Vivian into a life and death situation, just how are they going to do it? As far as mortality goes, HCM is most likely to strike young athletes. Vivian is not young or an athlete. Death is even rarer for people who have actually gotten a diagnosis. The show could possibly give viewers a distorted prospective on HCM in regards to mortality.
    I’m sure that the scripts are written, and if the scenes haven’t been shot yet, they soon will be. I am not sure if there is anything we, as an organization can do.
    However, I also believe in “six degrees of separation”. This message board is over 1000 members strong. Somehow, someway, someone has a contact at this show or at CBS. Perhaps someone knows Hank Steinberg, the show’s producer.
    At the end of each show, they flash some information about a recent missing person’s case, asking for information. Instead of fantasizing about a Super Bowl ad, I’m now hoping for a little blurb about HCM and giving this website as the best source for more information. Can we try to make this a reality?
    Fx

  • #2
    Felix,

    I've not watched this show either but have read the transcript from a recent episode. It seems they are actually approching it reasonably. She is on Beta-blockers and the options they are giving her are between myectomy and ablation. She also mentions that before anything will get done she will have a second opinion. So, at least they are not going completly off the deep end. As hollywood goes nothing ever gets perfect representation. What I see though is this 15 million people have now been exposed to the phrase "hypertrophic cardiomyopathy". The positive to that is when they type it in the HCMA is the second hit on the Google search engine. That is phenomonal!

    I"m guessing where the life or death spin comes into play will be during the myectomy. While, complications are rare it does happen. Paul can attest to that and I'm not sure if you were a member at the time one member did die from complications to the surgery. Although, both instances were not because of HCM it may be ths spin CBS goes for.

    Just my two cents on the matter,

    Mary S
    PS here is the HCM part of the transcript from 3/31/2005

    (The doctor puts a band-aid on Vivian's arm. Vivian sits on the exam table in a
    hospital gown.)

    LAB TECH: Okay, you are all set. Remember to make that follow-up with Dr.
    Marsh on your way out.

    VIVIAN: Thanks.

    (The lab tech takes his things and leaves.)

    MARCUS JOHNSON: Ooh ... you all right?

    VIVIAN: Yeah. I'm sure it will be a little stiff.

    (Marcus Johnson stands up and sits down on the exam table next to Viv.)

    MARCUS JOHNSON: I meant what Dr. Marsh said. Beta blocker's not working.

    VIVIAN: Maybe this new dosage will.

    MARCUS JOHNSON: Viv ... even he says that it's a long shot. And these other
    options - (reads off his notes) -- this septal ablation and the myectomy Honey,
    this is open heart surgery.

    VIVIAN: Yeah, which Dr. Marsh has performed more than any other surgeon in the
    city. Besides which, I won't do it until I get a second opinion.

    Comment


    • #3
      Waaa... I feel cheated! All we get here are pirated versions of previous seasons and I love this show.

      Oh, well, at least I don't have to wait week after week to find out what happened next!

      Rhoda

      Comment


      • #4
        I have written to Without a Trace myself. I am waiting to hear back from them. I will keep you all posted.

        Thanks,
        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


        • #5
          I have faithfully watched every Without A Trace show since it first hit the air. I've gone to the site and read what is going to happen this season.

          The only problem I have, so far, is Vivian not going to work. In my opinion, this is misleading. How many of us DO work and continue with our every day chores too? Vivian doesn't seem to be in the "final stage".

          Lisa....I am so glad you have written to Without A Trace. Hopefully they will contact you and you can suggest a HCM specialist to contact to continue on in the right and correct direction with Vivians treatment and progress. If they really want to get rid of Vivian, I'm sure they won't want to hear any suggestions from people who have so much knowledge first hand.

          Here's hoping you do get connected.
          Esther

          Comment


          • #6
            Well i believe all of us with this disease are different in our own way, my brother died in his car on his way to work and he had the disease well was diagnosed with it for 8 years, and from what i have read there are people working and people that can't hold down a job like me, sometimes i wonder how my brother did it sometimes, i have done a couple loads of laundry today and feel like i could lay down and take a nap

            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


            • #7
              Originally posted by Laoshur
              Waaa... I feel cheated! All we get here are pirated versions of previous seasons and I love this show.

              Oh, well, at least I don't have to wait week after week to find out what happened next!

              Rhoda
              Can you get regular mail? I can tape a few episodes and mail them to you if you want.

              Reenie
              Reenie

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

              Comment


              • #8
                I hear clearly what you are saying Shirley.

                There are several like yourself who have difficulty functioning in any normal fashion with HCM. The degree to how it effects us all is varied and different on any given day. Yesterday , I was able to go out to a restaurant with 2 dear old college friends and have a light lunch and conversation. By afternoon yesterday and starting today I am not worth much other then scuffling from room to room. I could no sooner hold down a job then get through each day without frequent rest periods including naps. I think it is very hard for those who have mostly challenging days to not strongly identify with the version of HCM that Vivian is appearing to exhibit.

                While watcing her on the last episode , I could not help but say to myself , "oh my she looks as tired , worn out and overwhelmed as I, you, and some others often report."

                I feel as with the portrayal of any disease in a concentrated form shown on television, the producers will follow a story line regarding a complex case of HCM.( For the audience it will evoke more interest and empathy). This does not however portray the vast array of variation of effect that each HCM individual faces uniquely nor does it serve to accurately educate the masses. I hope it serves to at least lead to more people looking into HCM and finding that there is a lot more to HCM then any fictional television version could exhibit.

                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


                • #9
                  Shirley.......
                  I agree with you somewhat. When I was FIRST diagnosed with HCM, I held down two jobs, took care of a 3 yr. old daughter and did gardening. To me Without A Trace is portraying that Vivian can't do much of anything from when she was first diagnosed. For the majority of us, we can function almost normally in the beginning of our diagnosis, but as time goes on we can do less and less. I just don't want anyone to think "Oh my gosh,.....if I had that disease, I should just lie down and die". That isn't true.
                  I do believe if they would get their facts right, people wouldn't be mislead,
                  Esther

                  Comment


                  • #10
                    I just want to remind everyone here that this show is a drama on a major network. Its main purpose is to generate Nielsen ratings so that CBS can sell advertising and make money.

                    While social responsibility is something that I am sure that the networks take seriously, they are first and foremost in the business of making creative choices that will entice viewers to watch which will raise its numbers which will result in $$$ to them.

                    So, whatever choices that they make in the story arc on this show are the ones that work dramatically. It is not very interesting that I go to my doctor every few months, get an echo, and have him change my medicines around a bit which is the reality surrounding this disease.

                    The producers are not in the business of making sure that they have the best HCM experts making treatment choices for this character. They just want to make sure it is believable to the public so they will watch.

                    And by the way, we do have doctors out here that know what they are doing with regard to HCM.

                    I just think that everyone here has to recognize that the format of one-hour dramas on television is designed to entertain...not to educate the masses on the nuances of HCM and its treatment.
                    Daughter of Father with HCM
                    Diagnosed with HCM 1999.
                    Full term pregnancy - Son born 11/01
                    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                    Comment


                    • #11
                      Maybe there are contract negotiations going on between the CBS and the actress and the character's fate is still up in the air ?

                      (My personal experience with Sudden Cardiac Death ...... Two years ago when I was 39 years old [before ICD implant], I was in my bedroom, I bent down to pick up my slippers and when I stood up, I felt my heart stop. It took about 4 seconds and everything went black and I hit the floor, I woke up to Ryan shaking me vigorously and yelling "Wake Up!")

                      And if she does have surgery, I hope they use terms that the public can understand. People do not know what a Myectomy is, they need to explain it, I hope they do (or did) that in the show's script.

                      I hope they contact Lisa to make sure it is not too Hollywood.


                      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


                      • #12
                        At the end of last weeks show there was a little blurb that came up in memory of ??? did not catch or remember the name but I was wondering if someone on the show or associated with had died of HCM. Which would explain the story line. Also whom ever may have had it some time with a dx of IHSS as that was my dx. years ago. Just a thought.
                        Midge

                        Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                        ICD&Pacemaker 1996
                        Heart transplant March 19, 2004 @ Mayo Rochester
                        Mom of Kaye.

                        Comment


                        • #13
                          Originally posted by Cynaburst
                          It is not very interesting that I go to my doctor every few months, get an echo, and have him change my medicines around a bit which is the reality surrounding this disease... The producers are not in the business of making sure that they have the best HCM experts making treatment choices for this character. They just want to make sure it is believable to the public so they will watch.
                          I agree with Cyn here...

                          I'm not certain i understand where everyone is coming from in their critique of the show. All this time we've been trying to educate the public, our families, and our friends as to just how serious this disease is and how disabling and sometimes even deadly HCM can be. Yet now we're going to pick the show apart because they're being too dramatic? Good grief! This is not the time for that. Let the network put Vivian through the ringer!

                          Much of the viewing public is just now hearing about HCM for the first time... do we really want them to think it's 'not that big of a deal'?

                          "Tune in next week while Vivian checks her blood pressure!" LoL.

                          As long as they don't go out of the realm of possibility with HCM, i hope the network gives Vivian every known symptom, medication side-effect, treatment catastrophe, or work-related issue they can conjur up. Heck, give her CHF and let her bloat up for everyone to see.

                          Bring it on!

                          Jim
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #14
                            Jim,

                            Good point!!

                            You are right!

                            I love the "Bring it on!"


                            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


                            • #15
                              Hmm,
                              Heck, give her CHF and let her bloat up for everyone to see.
                              I wanna see the makeup for that!

                              But, unfortunately, Reenie, mail service is expensive, slow, and not likely to get here. Also, if you sent me a video, we could not play it because they do not have vcr's here and if you sent me a DVD or VCD, it would probably get stollen so someone could copy it for sale!

                              Rhoda

                              Comment

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