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IHSS--or HCM

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CassandraAK Find out more about CassandraAK
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  • IHSS--or HCM

    I am new to the forum, and just curious about one thing. My husbands family has this condition and his father, uncle, grandfather and brother all had the disease and died suddenly. My husband and I were debating as I was told, and I know he was to, when he was in his 20s, that he should be checked every few years, especially as he gets older. He is telling me the last cardiologist he saw, told him he was clear and didn't have to worry about this anymore. From all the research I have done, including the New England journal, it indicates that especially as you get older, you should be checked. I could not find any guidlines on this.

    Also, I am very worried right now, as my daughter who just turned 18 is having episodes of poroxysmal nocturnal dyspnea and chest pain. I didn't put 2 and 2 together till i was reviewing this stuff to set my husband straight. Luckily I had her tested at age 7, and she looked fine then, but right now waiting for a call back to schedule a cardiac workup.

  • #2
    Re: IHSS--or HCM

    dear cassandra,

    if i knew that the strain of hcm that ran in my family had caused sudden death in that many of my relatives, you better believe i'd be getting an echo every year to make sure i didn't need an ICD, especially if i had kids. no matter what my doctor thinks he knows.

    most doctors still don't realize that hcm can show up later in life. now, if hubby is really clear and in his 30's, yes, he is probably clear for life --but not 100%. that stats are that most cases show up in early teens, 20's, but not all. most specialists recommend testing every 5 years in full grown adults.

    i would have both father and daughter evaluated by actual HCM specialists if you can swing it.

    ps - i'm not sure if your subject heading is a question or not. IHSS is the old-fashioned name for HCM and if hubby's doctor is all "IHSS" and you will never get it now you are grown, those are red flags that he is not up on the latest research and you need to find another doctor. call 973-983-7429 to find someone local or discuss the big center options.

    take care,

    S

    Comment


    • #3
      Re: IHSS--or HCM

      Your Husband should be checked every 5 years or if he starts showing signs and your daughter also every 5 years and younger children every 3 years, i also have a family history of alot of SCD in my family, it's better to be safe, Good luck and keep us updated on your family. Hope everything goes good for your daughter



      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


      • #4
        re hcm

        ok, I will rephrase the condition. I am from the old school, i suppose, when it was called something different, but the end result is devastating.

        I thank you for the update on re-evaluations. I knew I was right, and his family is so in denial. Nobody wants this thing, but damn, its so important to know whats going on with your health, especially those people that you love so much. His family has suffered such loss over the years, and basically I think they were in denial and still are. My husband is still there (denial), but I will do everything I can to make sure he is checked and my children.

        Thanks to everyone, I really do appreciate this site.


        Cassandra

        Comment


        • #5
          Re: IHSS--or HCM

          c

          i understand the denial, we all have it from time to time --however, now that all you have to do is get an implantable cardioverter-defibrillator (ICD) to prevent sudden death, there is no reason to stick your head in the sand. i would remind him that his kids would prefer he stick around!

          (yeah, i play dirty when it comes to life and death)

          s

          Comment


          • #6
            Re: IHSS--or HCM

            Cassandra, HCM and IHSS are the same thing, only HCM is a more accepted term by specialists. There are statistics that show people who have been screened throughout their lives not exhibiting clinical HCM until they are older, sometimes 50+. So yes, your husband does still need to be checked. Your daughter too, for that matter.

            Sarah mentioned ICD - implanted cardiodefibrillator. That's like the paddles they use in the ER or on the ambulance to restart your heart. The ICD is just that, only implanted in your chest. There are 5 risk factors that are weighed when making the decision to put an ICD in or not. 1) personal history of fainting, 2) personal history of blood pressure dropping instead of rising during exercise, 3) personal history of septal measurement being 3+ cm, 4) personal history of ventricular tachycardia, 5) FAMILY history of sudden cardiac death at a young age. Your husband needs to know this and so does the cardiologist.

            Let us know if you have any other questions.

            Reenie
            Reenie

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

            Comment


            • #7
              Hcm

              Thanks for your words of encouragement and reply. My daughter is scheduled this morning for an echo and ekg. I am very nervous about this, as her symptoms over this last year have been odd, and I just never put the 2/2 together that this could be whats wrong with her. I am praying its not.

              I am curious about the ICD though. If the problem occurs when there is thickening of the septum, how can placing these devices help, as from what I can see, cardiac death results from a closing in the ventricle?

              I work on a cardiac floor, at a hospital monitoring patients rhythms and have done a bit of reading about this, and still don't quite understand how either an ICD or pacemaker would help?

              Happy New year to all of you, may you have a safe and enjoyable holiday

              Cassandra

              Comment


              • #8
                Re: IHSS--or HCM

                Cassandra, basically HCM causes the heart muscle to be disarrayed instead of smooth and even. Please check out http://www.4hcm.org/overview/index.php for a picture. This disarray is what causes the thickening. SOME people have obstruction, which is what you're talking about when the blood can't flow correctly. Not all with HCM have this. This disarray can also affect the electrical conduction of the heart. That's where the ICD comes in. Many HCM'ers get at least some palpitations and some have more serious arrhythmias, like Atrial fibrillation, ventricular tachycardia, or ventricular fibrillation. As far as pacing goes, it's kind of a whole different matter. Some people benefit from pacing in that it makes them feel better. Some doctors experimented in the past with pacers to see if it would reduce hypertrophy since the heart muscle wasn't working on its own. That proved to not be effective because HCM is a genetic disease, unlike hypertrophy from high blood pressure. Although some ICD's can also pace, ICD's and pacemakers are apples and oranges in the HCM world. Please let us know if you have any more questions. And read through our site. There is a lot of information, not just on the message board.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: IHSS--or HCM

                  Hi Cassandra,

                  I’m an EP (Electrophysiology) Nurse. We study the heart’s electrical conduction system. I’ve been in this subspecialty for 13 years and will be happy to help answer questions regarding heart rhythms, ICDs, or Pacemakers. The folks on this BBS are very knowledgeable too, so together, we should be able to cover most of your questions or direct you to the appropriate source.

                  I’m going to list several URLs that are from various sites. The first will be from the NASPE website. NASPE stands for North American Society for Pacing and Electrophysiology. The site is: www.naspe.org

                  The URLs are in the Patient Information Section.
                  here’s the first for the “home” URL:
                  http://www.naspe-patients.org/patients/index.html

                  here’s the next one re: Sudden Cardiac Death (SCD) at which someone with HCM is at high risk for because of what the septal thickening does to electrical properties of the ventricles. When the substrate is changed then the electrical conduction changes and heart rhythms that wouldn’t normally be there, suddenly can pop up. Unfortunately, some of these (when they originate in the lower chambers, ie. the ventricles) can be life-threatening and/or fatal.
                  http://www.naspe-patients.org/patien...est/index.html

                  Here’s the next one re: SCD treatment, midway down re: ICDs for inherited disorders and this also has a link to a document “guidelines” that will go into what exactly ICDs are implanted for (this is a very technical document for use by physicians in this field)
                  http://www.naspe-patients.org/patien...treatment.html

                  Then if you go to this vendor website www.Guidant.com , you can see some nice pictures and get more ICD/lifestyle related info:
                  http://www.guidant.com/webapp/emarke...=proc&lev2=icd

                  Then this is a nice little animated video clip on VT/VF from WebMD that’s linked from this vendor website, www.Medtronic.com :
                  http://a1977.g.akamai.net/f/1977/144...Heart_Tool.swf


                  Cassandra, this is a lot of info to digest. If you get a chance to go through it and then are ready for more or have more specific questions, feel free to PM me or email me directly @ [email protected]

                  Hope this is helpful and Good Luck,

                  Warm Regards,
                  Laurie

                  Comment


                  • #10
                    Re: IHSS--or HCM

                    c

                    the short answer is that what causes sudden death in HCM is an electrical short circuit and the ICD is a little ecg machine in your chest that watches for the arrthythmia all the time. if and/or when a potentially fatal one pops up, the ICD sends an electrical shock to the heart, which stops the arrhythmia and forces the heart to restart with a nice, safe rhythm. think of it as rebooting the computer when it freezes.

                    this happens in a matter of seconds, which is why the survival rate is massively (like 90%? i think) better than if you had to wait for an ambulance, which may or may not even have a portable defibrillator on it.

                    you don't die b/c the heart chambers were too small --people usually get myectomies, ablations, or a new heart even, before that happens.

                    s

                    Comment


                    • #11
                      Re: IHSS--or HCM

                      You have received some great information from the postings above. Please read: http://www.enewsbuilder.net/hypertro...ffNT7,a1gC3wDM
                      [url]
                      There is an article with the consensus document that will clearly state when you should be screened. The posting above from Reenie was very clear, however if your doctor would like to see the guidelines you can print them out for him.

                      Best wishes,
                      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


                      • #12
                        Re: IHSS--or HCM

                        i just wanted to add that the reason why the HCM heart "shorts out" is because the muscle tissue is disorganized instead of smooth --this is also part of why it is thick-- so it is harder to keep the electrical signals traveling correctly.

                        while thicker hearts are at higher risk than thinner, as far as i know, there is not a _direct_ correlation between wall thickness and death rates. lisa, any word on that?

                        s

                        Comment


                        • #13
                          Hcm

                          Hi everyone
                          Well, I called the doctors office yesterday and they advised me that the test results were negative. This is my family physician, and I am not sure if I should have a cardiologist look at it, or if they should do some comparison with Ashley's original echo which was done 11 years ago. I am thinking that a cardiologist read it, but not sure if they know the history and what they should be looking at. I do think that they would notice any abnormalities though, regardless of comparison or history.

                          Thanks for all of your encouraging words and advice. The sites were very informative also. My husband is going for his testing soon, so thats just one more thing to get through, and then I suppose I should have my 15 year old son retested.

                          Cassandra

                          Comment


                          • #14
                            Re: IHSS--or HCM

                            thinking on this a bit more, what do you all think? Should she still have a cardiac consult reviewing initial echo and present one, or what?

                            Comment


                            • #15
                              Re: IHSS--or HCM

                              This is what I would do. Get your own copy of the echo report, measurements and all. You can look at the measurements and see if there is something odd about it. Do a search for a post called Echo Lingo and it has good information in it or you can post measurements here and we'll try to help you. Also, ask your PCM who actually read the echo.

                              Reenie
                              Reenie

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

                              Comment

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