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JanetL Find out more about JanetL
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  • Confused

    Hi All,
    I am new to this site so I am trying to find my way through. I have been Dx. w/ HCM w/ obstruction recently. I have been having some symptoms and in the last few months have been in the hospital 2 times for Chest Pain, SOB and Tachycardia. I am going to see a new Cardiologist at Northwestern University this month. I can't seem to find, in my searches, when the determination is made, to do an intervention. Is it based on LVOG or is it based on symptoms? My gradient is 52 at rest and 96 w/ exercise. I have read some stories of a much higher gradients. I'm feeling like I am not well prepared in what to expect when I see the new Cardiologist. I am a nurse and I should know better, or I feel like I should know better.....I'm just feel fatigued most of the time and confuses about what to expect. Would appreciate some assistance if I can figure out how the site works HA HA.
    Thanks!
    Janetl
    Last edited by JanetL; 01-06-2012, 02:20 PM.

  • #2
    Re: Confused

    Welcome Janet - No worries about figuring out the site. We did a redesign months ago and I'm still baffled! I too had fairly low #s, but my symptoms were high. That was the impetus for me to make some hard decision - Its not easy. HCM is a highly individual disease. Its never the same for any two folks.
    Once thing we stress here is the importance of seeing a HIGHLY trained HCM experts, These can be found here: https://www.4hcm.org/hcm/finding-an-...or/427832.html
    These doctors are active researchers and renowned experts in HCM. On the plus-side, they work with your doctors in your care. Most doctors see very little cases - literally 3-5 a year - if that, these experts see 3-5 in a day! Please call the office 973 983 7429, their great at helping you sort through all the stuff your worried about. Perhaps order the HCM book written by Salberg and Maron, some of the greatest minds in HCM.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

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    • #3
      Re: Confused

      I am going to an HCM facility: Bluhm Cardiovascular Group at Northwestern in Chicago. Hopefully after I see them I will have a clearer picture of what is going to happen. Thanks for the information!
      janetl

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      • #4
        Re: Confused

        They'll guide you well. Do keep a list of questions to ask them - There are no silly ones when it comes to your health!
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #5
          Re: Confused

          Hi Janet. Intervention is done when the patients (you) symptoms are refactory to medications (you still have symptoms that interfere with daily living) and you have a gradient > 30. There may be some other medications or increase in doses that would be of benefit before "an intervention". Kinda sounds like drug rehab, huh? I'm a nurse also and I was totally ignorant and was very shocked to hear that I was at the end of the medication arm and was headed down the "intervention" arm. Good luck at your appointment and let us know what they suggest for you.
          Linda
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08

          Comment


          • #6
            Re: Confused

            Janet, Welcome. Just keep playing with the site, ask specific questions if you are having a problem with the site. You've figured out how to post, so you're on your way!

            Linda

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            • #7
              Re: Confused

              Hi Janet,
              The others have given you good responses. I'll just repeat their suggestions that you call the office, and that you start writing your questions down.

              Gordon
              Myectomy on Feb. 5, 2007.

              Comment


              • #8
                Re: Confused

                Linda, what alternatives are there to medication? I am on generic lopressor and it makes me sleep. So what a four block improvement. Big deal. I want to see more, and no more chestpain. My gradient is 47 provoked, I am a borderline case for myectomy. And yes, i stopped smoking.

                Originally posted by LindaSo View Post
                Hi Janet. Intervention is done when the patients (you) symptoms are refactory to medications (you still have symptoms that interfere with daily living) and you have a gradient > 30. There may be some other medications or increase in doses that would be of benefit before "an intervention". Kinda sounds like drug rehab, huh? I'm a nurse also and I was totally ignorant and was very shocked to hear that I was at the end of the medication arm and was headed down the "intervention" arm. Good luck at your appointment and let us know what they suggest for you.
                Linda

                Comment


                • #9
                  Re: Confused

                  Philip, surgical intervention for those who are obstructed and refractory (no response or getting worse) to medication. Your doc will determine what is best for you based on your past and now current drug regimine and symptoms. You may not see 4 blocks as much improvement, but actually it is.
                  Onward and Upward !

                  Diagnosed 4/07 HCM with fixed & dynamic obstruction
                  Myectomy with resected cordonae tendonae 4/08 CCF
                  ICD 10/08

                  Comment


                  • #10
                    Re: Confused

                    I have a problem with medication managment. I have extremely low B/P. Usually runs 90's/ 50's. I was on 25mg of Toprol XL and I got extremely dizzy. I am now taking 12.5mg daily and seem to be ok, but I still am SOB w/ movement and I get chest pain. I was tried on a calcum channel blocker w/ the Toprol and my diastolic b/p (bottom number) was under 40. Then they had me try Norpace. I ended up in the hospital w/ chest pain and SOB. I don't know....we shall see what the Cardiologist at Northwestern recommends. I am occasionally dizzy when standing and things on the 12.5 of Toprol. There is not much else to try.
                    Thanks everyone!
                    Last edited by JanetL; 01-09-2012, 04:52 PM.

                    Comment


                    • #11
                      Re: Confused

                      JanetL,

                      I am also a nurse. Don't feel like you should know better on any of this. It is much easier to assess the patient and ignore/dismiss our own symptoms. Unless you specialize in this type of cardiology please don't blame yourself for not "knowing better". It is very complex and has a broad range of severity. There is a lot to learn. I'm still learning and I was diagnosed years ago. Going to a COE will help you answer those questions and give you a clearer picture of where you stand at this time. Hopefully they will also give you the book that mcube mentioned which has a wealth of information in it. I have referred back to it many times. I only recently found this site but am extremely grateful that I did. It's a lot to navigate through (I'm still working on figuring it out).
                      I hope you get some answers soon. Welcome to the site!
                      .....~Lisa J~......
                      Married to Michael since 1995
                      Four boys..18, 14, 5, & 3
                      (Youngest is gene positive)
                      Diagnosed in 2003 with HCM
                      Obstructive HCM in 2009
                      Septal myectomy Jan 24, 2012

                      Comment


                      • #12
                        Re: Confused

                        I did order the book on HCM suggested. I am waiting for that to arrive. The more I know, the more "yikes" I get.

                        Comment


                        • #13
                          Re: Confused

                          Hi Janet,
                          That's understandable at this point -- it's a bit overwhelming at first. But keep in mind that most HCM patients -- if they get proper care -- live about as long as anyone else, and are able to live pretty normal lives. Knowledge is power here -- the more you know, the better you can help yourself get appropriate care, and the less scary it becomes.

                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #14
                            Re: Confused

                            Janet,
                            You may be like some that have to get thru the surgery first before you take on additional learning/reading. There is nothing wrong with that. One thing at a time and you know enough about HCM for now. I think if I knew then what I know now, I'd be whipped up into a froth before the surgery. I was never afraid of the surgery (until I actually got there and met with Dr. Snedira because it was now "real"). We all cope differently. You are coming to the "home stretch" of your preoperative wait. You know yourself better than anyone. Do what you think you can "handle" and put the rest aside for later. One thing at a time. Post op it will all seem sureal and you will be on the other side very soon!!
                            Onward and Upward !

                            Diagnosed 4/07 HCM with fixed & dynamic obstruction
                            Myectomy with resected cordonae tendonae 4/08 CCF
                            ICD 10/08

                            Comment


                            • #15
                              Re: Confused

                              I am just seeing a specialist for the first time this month and am not sure that he will recommend surgery at all....thats the hard part, but I am thinking, if I were not at that point, my regular cardiologist wouldn't be sending me along so to speak. Just have to get through the weekend and then my appoinment is 1/17/2012

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