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Lisa Salberg Find out more about Lisa Salberg
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  • #61
    This is a long one...

    I'm a 25 year old female, currently in my first year of graduate school (MSc), and have recently been diagnosed with HCM. I have been complaining about HCM-related symptoms since high school, but was quickly dismissed by all 3 or 4 physicians I went to about it. They all laughed and said, "You're too young to be having heart-related problems", despite me telling them that my paternal grandmother had heart issues when she was young.

    My father (49) had a severe stroke 3 days into 2017. While in hospital for his stroke, they found that he has A.fib. The doctors believe that the stroke was a result of that. The doctors who treated him for his stroke advised that I get screened for any heart-related issues. I decided to pop into the doctor's office at my university campus. He found I had an obvious systolic murmur -that's when the cardiologist referrals and echo requisitions came in. I was put on a 48 hour holter and an echo, which had results confirming that after all, I have HCM.

    Shortly after that diagnosis I had an episode of severe symptoms coupled with presynchope. People around me noticed I had a holter on and decided to call an ambulance. I was sent to hospital where I had around 4 or 5 ECGs taken (along with xrays, a ct scan, and blood work). All the ECGs were abnormal and apparently showed evidence of a previous cardiac infarction.

    About a week later had an even more alarming set of symptoms; severe chest pain that made me jerk in my chair, and it radiated into my left arm and left side of my neck, along with shortness of breath. Hospital round two, but this time they wanted to admit me for a few days in the cardiology unit. I was seen by a team of cardiologists and was dumped the bad news of no longer being able to continue with my hobbies (scuba diving, rock climbing, a sky dive here and there, hiking, etc). I am also a junior geologist, and the cardiologist told me I can't be in the field that I want -exploration geology. I was pretty gutted at this point. The cardiology team had a genetics counsellor come in to see me in hospital, and had me do a stress echo which was **** and painful.

    Anyways, that's my HCM diagnosis story.

    Growing up I was always into sports, the outdoors/camping, hunting/fishing. As I got into my teens, I was noticing that no matter how often I stayed active, often doing "over-the-top" activities expected for my gender and age (I was in the cadets/military), I was finding it increasingly difficult to keep up with my peers. I assumed I was being weak and/or was out of shape, so I always pushed past the pain to constantly keep up. After being diagnosed, it all makes sense now.

    I'm very annoyed and angry at the doctors who ignored me and said that I was having my symptoms (palpitations, chest pains, shortness of breath, etc) because I was "stressed". Had this been taken seriously when I was younger, I would have started treatment earlier, and wouldn't be pulled off of important geology trips to Arizona, and Nevada. I was even presented with the opportunity to study some geology in the Philippines -but I have to miss out on that, too.

    Here's my first post to the forum.

    Comment


    • #62
      Hi Lub Dub,
      And welcome!

      Unfortunately, your story is too common - there are a lot of people with HCM who are initially misdiagnosed or laughed at by their doctors. At least in your case, you now have a reasonably convincing diagnosis.

      But here's the thing: most cardiologists (even good ones) don't know a lot about HCM. For example, maybe you've had a previous infarct, but people with HCM commonly present with this kind of feature on their ECG. That alone should motivate what I'm going to say: you should see an HCM specialist at one of the Centers of Excellence for HCM. These are people who are up on current treatment, know about what kinds of activities are reasonable, and the like.

      I can't say what's safe or unsafe for you, but, well, I'm a lot older than you, and I travel a lot. Some of it to fairly remote places. Some things I wouldn't do (scuba - biggest problem is that it's a danger to your diving partners), but I hike, bike, etc. I'm slower at hiking than I'd like to be, but I can still do it.

      So make an appointment with one of the centers. Yes, it'll cost money (many insurance plans cover it, but some don't), but it's worth it.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #63
        Hi Gordon,

        Thanks for the advice. I've never heard of a Center of Excellence for HCM before; wondering if this is in the US? I've been referred to a cardiology unit in the city (in Ontario, Canada) I'm currently living in, and specifically to a physician on that team who specializes in HCM -would this be an equivalent to what you're referring to?

        Thanks.

        Comment


        • #64
          The most well known are in the US..... Mayo Clinic Rochester, Cleveland Clinic, Tufts University. There is a list of CoEs on this website. If I remember right, there is one at Toronto General if you are in Canada.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

          Comment


          • #65
            Hi Everyone,

            I am in the process of being diagnosed with HCM - i have had yearly ECG's and ECHO's since my dad was diagnosed 12 years ago.

            i had genetic done at the beginning of the year and was found to have the defective MY BP C3 gene.

            I had an cardiac MRI scan in march of this year and the results showed some asymmetrical septal hypertrophy with a maximal wall thickness of 15mmHg

            I have been sitting on this information, waiting for an appointment to see my Cardiologist (which is in 3 hours time!!) but have sketched myself out buy going online and over researching everything.

            I'm normally one to post on facebook but this feels like a private matter (until things are officially confirmed0 but if anyone can give me any pointers of things to discuss with my consultant or what to expect it would be greatly received

            Comment


            • #66
              Welcome emerald.... Just remember that not everyone with the gene ends up with it being expressed. You are absolutely doing the right things for yourself, EKGs, Echos, check ups. 15 mm thickness is not too concerning. If it was close to 30 it might trigger some other tests needing to be done. I hope you are following up with a cardiologist that is part of a COE.
              HCM has two main directions to look at as far as treatment: 1) Risk for Sudden Cardiac Arrest and 2) Symptoms that interfere with daily functioning....chest pain, SOB, exercise intolerance, light headedness etc.
              If you have no symptoms or mild ones there may not need to be any treatment...... You also may be a candidate for research studies for new medications they are finding can actually decrease the progress of hypertrophy
              By now you are in with your Cardiologists so hope you get the answers you need. A very useful and evidence based summary of HCM can be found on the app. HCMCare it was created by HCM specialists at Duke University and is free. They also have a website and I believe they list current research studies on both.
              There is an HCMA closed Facebook Group too if you are interested.
              Please do become familiar with HCM and its treatments through reliable sources.....You need to be informed, but not freaking out. This is a very manageable disease. Often times you will find " worst case scenarios" on line that give a slanted view of what life is like for the vast majority of HCMers. Web sites and utube by well known Centers of Excellence; Mayo, Cleveland Clinic, etc are a good place to look.
              Best of Luck to you!
              After years of symptoms:
              Officially Diagnosed HOCM 2006
              Myectomy 3/11/13 at non-COE
              Extended Myectomy 7/23/14
              At Mayo with Dr. Joseph Dearani

              Comment


              • #67
                Greetings.

                I was just diagnosed this summer with HCM. It was kind of a surprise since as far as I know no one in my family has ever had any heart problems and all have lived through their late 80s or mid 90s. I will turn 70 myself this coming spring.

                I began to notice last year that I was having difficulty climbing hills in my home town, which I attributed to being a little out of shape. I have exercised faithfully most of my adult life but in the last two years family problems and sciatica kept me off my feet and put on 25 extra pounds. I figured I just had to get back on program. But then I started to feel faint and dizzy on top of the shortness of breath. My first doctor visit turned up nothing so I basically figured it was all in my head.

                Then this year I couldn't ignore the dizziness and this time the echocardiogram did show HCM with a thickness of 2.0 cm. A followup MRI determined the thickness was 1.3 which my dr said was "reasonably mild". I take Toprol 25 mg, 2 in the a.m. 1 at night and feel much better.

                I do yoga, weight machines, elliptical and walking and my doctor says I can exercise as much as I want just pay attention to my body and if I feel faint then cool it for that activity at that intensity. I have been slowly taking the weight off at the rate of 2 lbs a month. I have 15 lbs to go.

                I am awaiting my genetic testing results.

                All in all I feel optimistic and relieved. I had cancer 25 years ago and if I have to have something wrong I would prefer this.

                Comment


                • #68
                  Welcome, Marmariposa! Glad you've already started getting care. One recommendation: get the HCM book, available from this website. It'll give you a much stronger background in HCM than you can get from web sites.

                  Gordon
                  Myectomy on Feb. 5, 2007.

                  Comment


                  • #69
                    Thanks Gordon. I forgot to mention I am being treated by Dr. Hari Naidu of WCM which is in the process of being certified as a COE. I also attended an HCM conference in White Plains, NY just this past weekend which although directed mainly toward cardiology professionals gave me lots to mull over.

                    Comment


                    • #70
                      Age 62. I was diagnosed with obstructive HCM this year. I was originally diagnosed with asthma/GERD at age 45, and was diagnosed with a heart murmur prior to this. At that time I was also referred to an asthma doctor who said I had GERD, and a cardiologist who tested me with treadmill stress test and an echocardiogram and said I did not have heart disease. I have had lung congestion since age 45 and was put on an array of asthma meds, including steroids. I also had pulmonary tests to confirm the asthma. No matter what medication I took I continued to have periodic lung congestion over the years. My last GP appointment the doctor said my murmur was worse and thought I had aortic stenosis and referred me to a cardiologist. I went to the cardiologist after receiving abnormal echocardiogram results, thinking I would have to have surgery (my brother had just gone through open heart surgery at that time) and was told I had a mild case of HOCM. The cardiologist also ordered a pulmonary test, the results showed I do not have asthma! The doctor then took me off all asthma meds as they could cause problems with my HCM. I am on verapamil, which has decreased my symptoms by 80%. I feel frustrated that in the past doctors did not hear me when I said I felt like I was drowning from the congestion in my lungs, and did not do more pulmonary tests over the years, but I am grateful for finally having the correct diagnosis and medicine . I am learning to deal with the severe fatigue I continue to have, I am hoping someone has some suggestion for the congestion I continue to have. The congestion has been better since I've been on verapamil, but I am currently experiencing more severe congestion the past few days. I know my cardiologist saved my life with this diagnosis since the last year I have had worse symptoms and had to retire because of it. I am very thankful to have found your website.
                      Last edited by DGoetsch; 11-20-2017, 03:56 PM.

                      Comment


                      • #71
                        Welcome DG, I am glad you finally got a correct diagnosis. If you research past posts on this site, you will read story after story about people going through multiple diagnoses before some smart cardiologist figures out how to listen for HCM and do the correct testing to get a diagnosis....I started symptoms in my 20s and got diagnosed finally at 57!! One of the diagnoses was asthma. It is possible of course to have both, but I have found that the back pressure on the lungs from the stiff left ventricle... can cause the same wheezing and trouble exhaling as asthma......I also take Verapamil like you and at the age of 65 had a septal myectomy with astounding results. Although I got good treatment from the Cardiologist that diagnosed me, I got improved, excellent and state of the art treatment from going to an HCM Center of Excellence for an evaluation.
                        Even though you are grateful to your cardiologist....if he is not a part of a COE he could be missing Subtle identifying characteristics of HCM that can be treated and improve your quality of life....I too was forced to retire due to HCM. However, now, due to top notch medical and surgical management, I am having a glorious quality of life. I live in Denver and went to Mayo Clinic in Rochester MN. I picked Mayo because I had obstructive HCM and often the answers to obstructive HCM involve surgical intervention....Mayo, CCH and Tufts are the COEs with the highest volumes of HCM surgical interventions.
                        I recommend reading up on a HCM and becoming your own best advocate. There is a lot of material to study, a list of COEs and phone advice through the HCMA.
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #72
                          Newly diagnosed with HOCM and still in the freaked out stage lol. I'm 42 year old white male and father of two. My son is a very active athlete and the fact he could have this bothers me more than my condition does. Hopefully finding this forum will help me with questions and answers. Thanks for setting this up admins

                          Comment


                          • #73
                            Hello everyone. I am 32 years old and while I've yet to be diagnosed, I just found out that it's very likely I have HCM as my father was recently diagnosed. I have been dealing with palpitations and sporadically irregular heart rhythm for the past few months. My blood pressure has also been registering as higher than normal (145/85). I have an appointment scheduled next week but I'm currently freaking out because of these symptoms. Is this a medical emergency? What can I do to take my mind off this situation? I'm already predisposed to depression and anxiety, and I know these factors can make things worse in the heart. Help!

                            Comment


                            • #74
                              Hello Tyler...
                              Take deep breath .... In General HCM is not a medical emergency. If you are passing out or having severe chest pain of course you should be seen emergently regardless of what the diagnosis....But for now, your biggest enemy is lack of knowledge about whether you have HCM or not and knowledge about the course of the problem if you do have it.
                              First of all, if you need to talk to some one knowledgeable about HCM before you get into a doctor for testing, you can call the HCMA office listed on this website and speak to someone there.
                              Second, You are less than an hour and a half from an HCM Center of Excellence in AnnArbor, HCMA recommends, that to get the best and most accurate up to date evaluation for HCM, that you go to a COE for your work up. This will give you peace of mind and a plan to move forward if the diagnosis is HCM. Local Cardiologists do not see this diagnosis often enough to become experts in managing it. University of Michigan Cardiovacular Center .Dr. Sharlene Day .888-287-1087 is in Ann Arbor. COE information can be accessed on the first page of this website.
                              Write down your concerns and questions, bring them with you to your evaluation and know that this is very manageable diagnosis if you are found to have it.
                              After years of symptoms:
                              Officially Diagnosed HOCM 2006
                              Myectomy 3/11/13 at non-COE
                              Extended Myectomy 7/23/14
                              At Mayo with Dr. Joseph Dearani

                              Comment


                              • #75
                                Hi Tyler,
                                What Jill said! Yes, I know it's easy to worry. But the fact is that if you have HCM you've probably had it for some time, and while it IS a serious disease, it is very, very unlikely that you'll have a life-threatening crisis between now and your upcoming appointment.

                                And yes, please see an HCM specialist at one of the Centers of Excellence - and the one in Ann Arbor is a great choice!

                                Gordon
                                Myectomy on Feb. 5, 2007.

                                Comment

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