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Looking for some answers and support


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  • Looking for some answers and support

    Hello my name is Paul and I am a 23 year old nursing student. About 5 years ago my father died a sudden death and the autopsy said the cause of death was HCM. I moved on from his death emotionally but I feel extremely worried recently because I had always thought that since my dad was one of 8 kids and none of his brother and sisters had heart problems that is was probably a gene that was recessive and only occurred once every few generations. Also there are no reports of sudden death in his family. My grandfather (my fathers father) had a few heart attacks but did not die from them and lived to be 96 and his wife 93. My father died at the age of 43. Recently I looked up online that HCM is caused by dominate genes meaning that if you have a parent you have a 50% chance of inheriting it and it can develop at any time. That freaked me out. What even freaks me out more is the details about my fathers death.

    My father had been been diagnosed with multiple sclerosis a few years before his death. The neurologist said he likely had this all his life as he had symptoms at different times in his life. About a year before he died he also had a heart murmur and was diagnosed with Mitral Valve prolapse as the cause of the murmur. He met with cardiologist one month before he died and had and echo cardiogram. He was not diagnosed with HCM then with the test then died from it a month later.

    Now the rest of the family and I are not looking to sue anyone or blame anyone for his death. I just want some piece of mind. The fact that the electrocardiogram did not detect HCM means one of two things. He had it and the test did not reveal that he had it, either because they were not looking for it and were just interested in his Mitral Valve prolapse or something else. Or it means that he did not have any signs on the electrocardiogram a month before he died and had a form of HCM that developed fast enough that in one month it killed him. So my first question is this. Has anyone ever heard of HCM developing that fast? I know that most people on here are not medical professionals but how likely do you think it was that my father did have this all along and the test was just a false negative? I am just terrified that I am going to inherit a form of HCM that might develop over the course of one mouth and kill me in between my annual testing for HCM with no symptoms or signs whatsoever.

    Some more things that I am wondering about. My father was not doing any strenuous exercise when he died. He had been swimming some laps at the YMCA I work at as a lifeguard a few times a week but not really fast or for a heavy workout. When he died it was on a car drive home after a family reunion (ironically on fathers day). Fortunately I was driving because he made me since I just had gotten my drivers license and wanted me to practice. It happened about 45 minutes into a 2 hr drive. My dad and I were the only ones in the car and we had an argument about my driving. It wasn't a big one he was just nagging and I was just stubborn. We both were silent a for about 10 minutes after the argument. Then it happened I heard my father make a strange moan and he didn't respond at all when I called him. I pulled over and flagged a car down that was near by right away. They called 911 and we got my Dad out of the car and I started CPR within minutes with a nurse that had pulled over to see what was happening. We were on a back country road and It took at least 15 minutes for the ambulance to get there and shock him. They took him to the hospital and he died a few minutes after I got there. I was under the impression that most of the time HCM gets people who are really working out or something, I still do not know much about HCM.
    My father was extermely lethargic due to his MS progressing and had taken a leave of absence from work and was going to be evaluated by a state doctor a week later to see about disability retirement. My father was also on many medications to fight his tiredness caused MS. He would sleep most the day and was a heavy coffee drinker. So I am wondering if these medications may have caused the complications with his HCM that caused his death because he had no symptoms or signs leading up to I that I can think of. I know that HCM is often asymptomatic but could the medications he was on cause his death? I'm just asking because I am having my annual cardiologist appointment soon to run tests and I'm terrified that a test will not catch this soon enough for me. So far I have been negative on all tests they can do but if it developed and progressed to the point were it killed my dad in less then a month then it could do the same for me. Also genetic testing is not an option for me because no one told us when my father died to save any blood samples or whatever they use for testing. I know that not all forms of HCM have been identified yet so the only thing the test could do is confirm that I have a gene mutation for it that is identified or it could find nothing but I still could get it since the gene might not have been identified yet.

    I'm sorry for the wall of text but I've been terrified for weeks and I just want some people to talk to that know more then I do about HCM and what I should talk to my cardiologist about. As far as my health I have Asthma attacks occasionally about once or twice a month that happen at random no real trigger but they are not as bad or as often as when I was a kid. I have had moderate depression since before my dad died and have been on an anti-depressant for treating it. I have been fine until recently when I learned about the chance of inheritance being 50%. I have been getting some aches all over my body including my chest which worries me but I talked to my primary care doctor who thinks Its just because I am stressed out about this and nursing school and that it is just because of that. I appreciate any comments, support, or answers to my questions anyone can give me because this is on my mind constantly now.

  • #2
    Re: Looking for some answers and support

    I'm sorry to here about Ur father.

    If you do end up with HCM it is a condition that can be control with things like mebs and devices and alot of poeple can live a normal life with it, a lot of people in my family have HCM but the one good thing about it been a family illness is we can share it with each other we are all there for each other
    I don't think your father just got HCM and it turn that bad in a month people can have HCM really bad and live with it for years and other people can have HCM not so bad and die straight away, its just one of those things bad luck i guess. some people wont know they have it till they pass away and other are lucky enough to know they have it at a young age so it can be treated.

    As for not picking it up in the EGO , it doesn't mean it wasn't there my father had HCM for years and use to get EGO all the time cos he was been treated for another heart condition, as they were not looking for HCM there a good change they didn't see it.

    I hope you do not end up with it but remember if you do , your not along and this board is an amazing place for support they help me through so much, i lost my aunty and grandmother to HCM and alot of other people on here have lots family members too so we do know what ur going through and what it feels like

    good luck

    Last edited by purple_ness1; 12-09-2010, 07:14 AM. Reason: i cant spell
    Forever Young

    I was diagnosedwith HCM at 6.
    Went into Atrial fibrillation so had a ICD put in at 16
    Went into Heart failure at 17
    Got a heart transplant at 21(2009)


    • #3
      Re: Looking for some answers and support

      Paul -

      I am so sorry about the loss of your father. The loss of a parent at any age, especially when you are so young, is devastating.

      If you feel that you need to vent, cry or anything else remember that this forum is a very good place to do it, just writing it does help and the people I have seen on here will always understand as they have all been there themselves - no one is going to judge you and will always try to help you through whatever is bothering you - yes, you are right, we are not medical professionals but we are the ones going through the exact same things you are and able to tell you how we cope. If you feel professional counselling will be more helpful to deal there is no shame in seeking the advice of a mental health worker.

      For your own peace of mind I suggest you look for a doctor who deals with HCM on a daily basis - here they call them Centers of Excellence and there is a page that lists them, but you will find most answers you receive on here will suggest you call the HCM office for advice and recommendations for the nearest Center.

      I sincerely hope that you do not have HCM but if you do with the right doctors you have a very long and happy life ahead of you. I am 68 years old, had symptoms as far back as I can remember but was never diagnosed until about 7 or 8 years ago so it is possible to live with this with some limitations if your are symptomatic.

      Sorry, for rambling but have not had my coffee yet (by the way, both my local cardiologist and my HCM specialist do not want me drinking any, they say it is very bad for HCM).



      • #4
        Re: Looking for some answers and support

        Welcome Paul.

        I am sorry your dad died. Many of us here have lost loved ones and can relate at some level to your loss. You have our condolences.

        Calling the HCMA would be a great next step in getting yourself and your family checked out. While only around 3% of the HCM population is at risk for SCD, being treated properly and early on can add years to your life.

        Many of us have been diagnosed with MVP, asthma etc. and while these things do happen to people with HCM, having a proper diagnosis by someone who is an expert is a great help in formulation a proper treatment plan.

        The number for the HCMA is 973-983-7429.

        Peace to you.

        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness


        • #5
          Re: Looking for some answers and support

          Hi Paul,
          I'm sorry for your loss.

          I just want to comment on the genetic side of things. It's easy to make too much of the statement that HCM is inherited as a dominant trait. First, that's true for the genes that have so far been identified as contributing to HCM. But that only accounts for about 2/3 of HCM cases. Of the remainder, the patterns may well be more complicated. Second, dominance is not necessarily a fixed characteristic of any gene -- it really depends on the other genes involved. Finally, there are many families with stories that involve lots of people having HCM. But if you read this board for a while, you'll also find that stories like yours aren't that rare: someone has HCM and as far as they know, nobody else in their family does. There are two reasons for this: new mutations (which are rare) and the fact that having a gene that contributes to HCM does not guarantee that you develop the disease.

          Leon's suggestion is a good one: call the HCMA office.

          Myectomy on Feb. 5, 2007.


          • #6
            Re: Looking for some answers and support

            Welcome Paul.. so sorry for your loss.. and I agree .. call the HCMA office to get started. An EKG is not a definitive test for HCM.. an echocardiogram is much more definitive and sometimes an MRI is also what is needed to clearly extract any confusions. Seeing an HCM expert is first and foremost to getting the correct picture unraveled. Many of us went our whole life with questionable conditions and recurring symptoms that later helped confirm the diagnosis of HCM. Some of us have had genetic testing which helps to unravel many families diverse presentations of HCM and also the various paths that it takes each unique individual who has it. It is possible that your dad may have been more compromised by HCM and the MS diagnosis then it appeared to those around him. Our bodies and our overall management emotionally of our diseases makes it often hard for people to see just how ravaged we may have been and therefore it is not unusual for people to say you look great or so and so looked great, I can't believe he died!

            Because HCM is very diverse, individuals may barely have known anything was wrong and others will have had quite the opposite complaints. The disease effects different components of the heart function singly or combined effects may be at play or the HCM heart may progress to complexities of function.

            Having had HCM misdiagnosed in my self and many of my family members I tend to believe there is a lot more to this disease then even all our experts know and some will agree.
            I have had family members told they had and thus were treated for Parkinson's, MS, emphysema, only to see them die of full blown heart failure in the end or SCD with a post mortem of cardiomyopathy unspecified.
            HCM is a disease in which the trails are still being fathomed out and there is likely much disease diagnosis crossover.

            You will find many here who have multitudes of medical issues. Knowing my gene has allowed me to research more on the combination of medical issues that may be compromising my health and that of family members who have been tested positive for my genetic mutation. Although we vary by our own unique manifestation of mutations there are some similarities and recurring issues that seem to prevail in some families with our unique disease expression.

            As time goes on more will be learned .. I was able to give my blood for storage this week so that my HCM specialist and the researchers he works with can go to the pool of blood vials of many different and diverse HCM patients and some who are related so that these puzzles will hopefully be unraveled someday and many questions answered
            It is still early in the research and understanding of a disease that appears to have arms and legs into other various medical issues.

            To look at one of your questions .. Not all individuals who die of SCD die after a vigorous workout .. in fact many die in their sleep or during the rest period hours following an exercised event, some after an emotional stress. There is certainly something to be said about adrenalin and how our hearts handle it. The rise and fall.

            Please continue to come here and ask questions and do call the HCMA.
            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


            • #7
              Re: Looking for some answers and support

              Thanks for all the comments I really do appreciate them. As I said before the thing that scares me the most was that my father had an echo one month before he died for his MVP. So I'm just terrified that my tests will come back negative then ill get it and die before I can do anything about it. Do people in the same family progress at different rates and severity? Or is this something that is definitive? Like if my father really did get it and progress to the point of killing him in one month does that mean It's likely to go the same way with me?

              Ill try calling that number later today.


              • #8
                Re: Looking for some answers and support

                Hey Paul,

                I'm really sorry about your Dad, It's awful that you had to be there. Honestly I am no expert on HCM but I can offer you the details of my situation. I have had symtoms since my early 20's late teens. I had been to several DRs and complained of chest pain, shortness of breathe, palpitations, dizziness, and the sweats. I have had an EKG with my physical for at least the past 7 years to no avail. Last year during my physical my EKG came out irregular, after which I had an echo. My PCP told me that my echo was fine and there was a little enlargement but nothing to be concerned about. He was wrong, thankfully my sister is a nurse and she persuaded me to follow up with a cardiologist. Here I am a little more than a year later officially diagnosed with HCM and I had a difibulator put in just a few months ago.
                I had a cousin who died suddenly at the age of 29 but his father is alive and essentially well, and in his 70's. I am only 30, diagnosed and with an ICD. I am also gene positive as is my father. My father though is almost 63 and does not have HCM. So to answer your question it absolutely does develop differently and I have had genetic testing that has offered no answers. My mutation is newly discovered, as is alot of the information about this condition. It is doubtful that your fathers condition progressed that quickly. It is more likely from my experience that he was misdiagnosed for quite sometime. I dont know where you live but most PCP's and even some Cardiologist are not equipt to diagnose someone with HCM. It is a good Idea for you to check out the list of Centers of Excellence on the home page. Also contacting the office would probably point you in the right direction.I hope my info helped you sort through some of your concerns.
                I wish you all the best of luck, and even though its easier said than done try not to stress out too much!!
                "Life is not about waiting for the storm to pass, it's about learning to dance in the rain"


                • #9
                  Re: Looking for some answers and support

                  Paul - I'm so sorry for the loss of your father at such a young age. The way it happened made it even worse for you to have to deal with.

                  I'm glad you've found us. Please do make the call to the HCMA office. You will find much reassurance, support, and comfort from the office and from folks here.



                  • #10
                    Re: Looking for some answers and support


                    I echo the many condolences on the loss of your father. 43 is just not right.

                    FYI as far as echos go I am just going to add that the technicians seem to be like basketball players. There are some Michael Jordans out there. My preop echo at CCF was so perfect and clear compared to the ones I'd have done at my hometown hospital it was like looking at a pictue taken with a 15 megapixel Nikon vs a cheap cell phone.

                    If you truly need piece of mind get to CCF or Mayo and have a Michael Jordan take a look.

                    Toodle pip... Moosedreams
                    Diagnosed HCM Nov 2009
                    100 mg Atenolol; Baby asprin
                    First Trip to CCF June 2010
                    HCM Specialist at CCF... Dr. Harry Lever
                    Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
                    AICD w/pacer at CCF... December 20th 2010

                    Once you choose hope, anything's possible. ~ Christopher Reeve

                    Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125



                    • #11
                      Re: Looking for some answers and support

                      Yes Paul EVERYONE is different and this is very true in familial HCM. My brother is older by 4 years he was diagnosed after I had him go to my diagnosing cardiologist he has never been obstructed.. My mom is 82 and only over the last several years developed limiting symptoms. She has had symptoms all her life of HCM just not much restrictive symptoms til more recently.
                      I have lots more issues that have limited my life activities from the 40's onward, but have never had a sudden cardiac arrest. I do have an AICD and my brother is going to get one soon for protection. Until more recently he was not seen at a COE and now that he is, they feel it is needed. I have had 2 SCD's and 2 SC arrests in my family( those 2 were brought back.)

                      HCM varies quite a lot in family members.. order Lisa and Dr B. Maron's book, it will help answer all your questions. Great Christmas gift to yourself.
                      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


                      • #12
                        Re: Looking for some answers and support

                        Hi Paul. Welcome to the message board. I think that you have been given a very good and a very strong message. Get evaluated at a Center of Excellence. You are lucky as there is one right in your state. For many of us, we have traveled far to be seen in a center that knows what they are doing. Most local cardiologists typically only see less than a handful of HCM patients in their career. You clearly want to be seen by folks who do this day in and day out. The second piece of advise was also very good and pretty strong, which is to contact the HCMA office. You won't regret making that call.

                        Please know that all of us with HCM have been in your shoes to some degree. At one point or another, we have been pretty clueless about our disease. My hope for you is that you and other family members do not have it. But if you do, you've come to the right place for information and support. That's why we're all here.

                        You reminded me of my days in Nursing School. Yes, they were stressful, but I focused on every disease I learned and tried to determine if I had it. I think everyone in our class did the same thing. I think the stress of doing that increases anxiety. Please try to remember. Just as there is a learning curve in school, there is also a learning curve with HCM.

                        Again, welcome !
                        Onward and Upward !

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


                        • #13
                          Re: Looking for some answers and support

                          Welcome Paul
                          Sorry about your dad. My Mom was 48 when she died. I was a teenager. Im 46 now and have a AID.
                          After she died I was told to get checked every 6 yrs. i did. And they missed it again and again. This was a Cardiologist. When I was 43 , a new cardiologist found it , sent me to an EP and lined up a plan of action. I went to Cleveland for 2nd opinion. Their plan was nothing like the cardiologist had in mind. They re all good Docs. The point is, ya gotta go to a SPECIALIST.
                          I see you are in Ohio. Please call Dr. Lever at CC and listen to what he says. I know it's hard, but try not to sweat it. It's a real fickle disease, but it's not a death sentence.



                          • #14
                            Re: Looking for some answers and support

                            I am so glad you found us. And I am so sorry about your Dad. I lost my mom to sudden death when she was 46.

                            I have 3 brothers and all 4 of us have HCM, and all of us have different things going on. We also have about 9 or 10 family members that we know of who have HCM but no one has died due to sudden cardiac arrest for over 30 years. So the fact that your dad died suddenly does not mean you will.

                            I see you are in Ohio, so I will echo what others have said - go to Cleveland Clinic. My grandmother had HCM and was operated on there in the 1960's! They know what they are talking about! And like others have said, even very good cardiologists are not the folks to have as your primary care givers for HCM. You need to be evaluated by a specialist.

                            Also, I think the value of getting genetic testing is that if you do carry the gene, that may inform your doctor's decision about the logical next steps.

                            I am glad you've decided to call the HCMA. That is the number one most important thing you can do right now. Please keep us posted. As you can see by now, we do care.

                            All the best,
                            Diagnosed at age 53 in April 2010 (after having been
                            "cleared" several times)
                            Into running & cycling - cleared to continue at mild to
                            moderate level
                            Extensive family history
                            Lost my mom, aunt and nephew to SCD
                            St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"


                            • #15
                              Re: Looking for some answers and support

                              I'm so sorry about your loss and all the confusion Paul.

                              As others have said - HCM develops differently in different family members. My grandfather had HCM but got symptoms after he was 80. My father developed symptoms after 60. Of us 5 siblings, just me and one sister has HCM as far as we know. I'm very symptomatic but my 14 year old sister is much much better. (My grandfather was adopted so we didn't know so much about his parents but my father did some study and found out that both his parents died early in ways that could have been caused by HCM...)

                              Since your father had MS he had two progressing diseases and it's not unlikely that some of his medicines was not very good for HCM. A person with HCM also can have SCA without having a very big enlargement, so the measure of the enlargement is not all that matters. This feels peculiar to say, but there's a risk that your father was not well treated at all and that he could have lived if his HCM was detected earlier and he was treated better. But with that in mind, if you do have HCM and get well evaluated, you have a much better chance to live a long and healthy life.

                              I really don't think you have to be so terrified about HCM right now. There's so many HCM survivors out there as well.. And now you know about your possibility to have HCM and can see an expert in HCM, that is very good news for you! Wish you the best of the best!!
                              Living in Sweden with husband and daughter.
                              Diagnosed with HCM after severe shortness of breath while pregnant - 2008, 24 years old.
                              Had my little daughter a couple of months later - 2008.
                              Got an ICD - early 2009.
                              Have heart failure. Not able to work.
                              Thinking about the new operation not yet available here, apical myectomy.