If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Newly Diagnosed... start here!

Collapse

About the Author

Collapse

Lisa Salberg Find out more about Lisa Salberg
This is a sticky topic.
X
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • #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

                    Today's Birthdays

                    Collapse

                    There are no members with birthdays today.

                    Working...
                    X