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I am a very active 52 year old, recently diagnosed with hypertrophic cardiomyopathy not caused by high blood pressure. My doctor believes it is genetic. My father died at age 50 from heart problems. Anywho - I have had some mitral valve regurgitation that I was being treated for, but had symptoms that were progressively worsening and my pulse was increasing. Most recently, I became very dizzy and disoriented while playing sand volleyball, and collapsed. When my cardiologist performed a more extensive echo and EKG, they found that my left ventricle wall had doubled in thickness in the past 3 years, and is at a 41, when it should be at a 2. I was quite shocked. He said I would need surgery in 3 to 4 years, where they shave the muscle in the ventricle near the aortic valve. It is all quite scary to me and, while the calcium channel blocker they put me in has reduced my pulse rate and I’m not as tired as I had been, I still get shortness of breath, light-headed, heart palpitations, and tightness in my chest. I’m confused as to what symptoms are urgent, and I feel afraid much of the time. I am still exercising, but have lessened the intensity out of fear. My husband says I am worrying too much, but I can’t help but worry when I am always feeling the symptoms, especially now that I know I have an increased risk of heart attack or stroke. My cardiologist even made my husband and myself describe my condition so in case there’s an emergency, we know what to tell emergency personnel. That’s scary!!! Any input would be appreciated. 💔
marshamd59, December 30, 2018 11:33am EST
Hi MargiBru - I know it’s super scary when you’re diagnosed with any kind of heart disease and it’s hard not to worry. Just know you’re not alone and you’ve come to the right place for support. The Technology and medications they have now are so much better than our parents and grandparents had and having a diagnosis and being aware is a huge advantage. Follow your doctor’s advice and also do some of your own research which I’m sure you have. It sounds like you definitely need to lower the intensity of you workouts which you said you’ve done. Do you have a Fitbit or something that can monitor your heart rate while exercising? It would probably bring you peace of mind and you would know if it’s going too high and you need to bring it down. You could also talk to you doctor about an ICD (defibrillator) which can save you life if your heart rate does go high enough to cause cardiac arrest. As far as other symptoms just be aware if they get a lot worse, but it never hurts to called your doctors office if your worried for peace of mind. You could also ask about heart valve repair. I had mine repaired with a Mitraclip which is a non invasive surgery and helped me feel quite a bit better. Also, I’ve been living with cardiomyopathy for 12 years now and congestive heart failure for 4 years and my quality of life is really good. So try not to let it worry you too much. Just be aware, be wise and lots of good communication with your doctor. Keep us posted as to how things are going. In the meantime take care and I wish you all the best.
MargiBru2018, December 30, 2018 4:32pm EST
Thanks, Michelle! I think I’m still in the angry stage. I’ve always had a healthy lifestyle, so it’s just ironic that I’m the one in the family with heart problems. 😕 Of course, I wouldn’t wish it on anyone else. I do have a FitBit HR and it gave me the ability to show my doctor what my heart rate was during different activities. I will definitely ALWAYS have a heart rate monitor on my fitness watches, and will wear them at all times! Thanks for brightening my day! 😊
AHAASAKatie, December 31, 2018 9:07am EST
I am so sorry that you and your husband are having to manage this! I can share the patient education resources we have on hypertrophic cardiomyopathy. Please let us know how else we can support you during this time! Best Katie
MargiBru2018, December 31, 2018 11:42am EST
Thank you, Katie!
HeidiCordero, January 13, 2019 5:53pm EST
Hi MargiBru and anyone else struggle to face Cardiomyopathy,
I have Hypertrophic Cardiomyopathy too. I am 50 years old and I was diagnosed at age 47. I have dealt with many of the same things as you - anger, depression, frustration, confusion. Along with HCM, I have Ventricular Tachycardia where my heart races when I exercise - Sometimes 200 - 250 beats/minute. Fortunately, it's non-sustained so it stops on it's own when I slow down. It's a tricky place to be when you know that your heart will weaken if you don't get cardiac exercise but if you do, your heart may go crazy. I have an ICD (implantable cardioverter defibrillator) which helps regulate my heart and will get it going again if it should ever stop. I also always wear a Fitbit. My V-tach was discovered on a stress test in the cardiologist's office. After two years I had no significant episodes. I was feeling like maybe they had made a misdiagnosis or perhaps I had been healed. Last summer I had another stress test. To my extreme disappointment, my heart went into V-tach (racing) even quicker than two years earlier. I was so discouraged afterwards. I was told not to do any swimming, don't exercise by myself, see an EP specialist every 6 months, wear a heart monitor, etc, etc. I am a school teacher and I worried about going back to work. What if something happened, especially when I was working with little children? The "What If's" began to mount up and up until I was almost feeling paralyzed with fear to live a normal life. Then my daughter's friend's father suddenly died of an undiagnosed heart condition. This middle aged father was one of the friendliest, outgoing people I know. He was physically active and commited to helping others. I cried through the entire funeral. After the funeral I had an epiphany - Thank God I have life, Thank God I have a diagnosis, that I have an ICD, medication, family, friends, a job. I had to stop letting my fears strangle the life out me. I am active in my church and I decided to lead a Bible Study called, "Winning the Battle Against Worry" by Barb Roose. It was the most transformational study I've ever done. The first lesson was "Replace the "What If's" with "God If". In other words, God if ... you have given me this condition, you will sustain me through it. God if ... you allow me to live this day, let me live it to it's fullest. God if ... you allow me to life, help me to be appreciative of everything. I'm no longer afraid, especially not of dying. I would be lying if I said I never worry any more. I do still worry sometimes but I have 12 strategies that I can actively use to fight the worry. I used to pray and pray for God to heal me but now my prayer is that he would sustain me and use this condition for good. That's one reason I joined this site. That's why I'm taking several of my friends to a Heart Health event (there are many in February). That's why I continue leading studies at my church. That's also why I get to experience fun things like doing Zumba in the basement with my entire family (before I would have exercised by myself but now they know together is better). That's even why on snow day like today I can take advantage of my condition and excuse myself from shoveling snow - which I never liked anyway. My V-tach is also triggered by stress and anxiety and although God may not have miraculously healed me, I know there has been healing spiritually, emotionally and psychologically which converts into physical healing. I wish that you and anyone else who actually reads this can find some of the peace that I have discovered.
MargiBru2018, May 5, 2019 12:39am EST
UPDATE: Good news! I saw a new cardiologist who didn’t want to play the guessing game, so he ordered a cardiac MRI. It confirmed that i had hypertrophic cardiomyopathy, but that it’s not as bad as what showed on my prior cardiologists’s echo/Doppler. Heart wall thickness is almost doubled, which is MUCH better than quadrupled! He assured me that there was much that could be done before surgery was needed. I feel SO MUCH BETTER about my HCM now! I’ve accepted that i have to modify my lifestyle - no more competitive volleyball and more controlled exercise, like treadmill and arc trainer, as opposed to HIIT training and other more strenuous exercise. I’ve always been athletic and pushed myself, but i now know that that is no longer an option. Thank you all for your information and support! I will continue reading on here and hope you keep me updated on how you all are doing.
MargiBru2018, May 5, 2019 12:50am EST
And, thank you, HeidiCordero, for sharing your story. It did make me feel much better! I just realized that i hadn’t responded to you. Every morning, I wake up and know that God gave me another day, so I need to do something His glory with the day! ❤️