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Hello and new to the group with HOCM diagnosis
Hello everyone,
I was diagnosed with HOCM this summer with multiple echocardiograms and an MRI. I had the genetic test, but no gene was identified. My father died of heart disease when he was 60, and there is a pattern of multigenerational paternal heart disease. I'm 74, athletic, fit and other wise very healthy. I am grateful for the good medical care I've gotten. It was a big surprise to have heart disease. Although I had been told occasionally that I had a murmur no follow up was recommended before this time. I am currently asymptomatic. I am taking Metoprolol 25 mg once a day in the evening, and instructions to stay hydrated. The obstruction is the mitral valve, and there is regurgitation and a moderate gradient.
I'm so happy to be part of this support group and will contribute anyway that I possibly can. Like many of you, I have faith in the Lord, and I am very blessed to have had a long and healthy life. Sometimes in the beginning of this journey, I was very frightened that I would suddenly die, or that I had "given" it to my two sons. Since I've learned more, I am calmer, but a bit obsessed!!!
Any suggestions are warmly welcomed. I wish you all a happy day and every success going forward.
Margie
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@margieinsb I don't know how to share this, so I'll just say it. My 47 year old son has hcm but caught it very early. They are now monitoring him and me at an hcm clinic. Please encourage your sons to find out. Also, if they have hcm and have kids, the kids need testing too. Kids did NOT Inherit it here. It's a 50/50 roll of the dice. But my son has it and is being seen regularly by cardio. He is asymptomatic. Early detection saves lives, for kids too. Mom worries. Never ends, huh? We didn't know we inherited it, but we did. If not for your sons, for the sake of any grandkids, they need to know. Really important.
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1 ReactionThank you for sharing your story. I was recently diagnosed with HOCM after a trip to Chicago over the summer. I went to see my doctor when I got back because I had shortness of breath walking in Chicago in 100 degree heat and very poor air quality from the Canadian fires. I really thought I had pneumonia or something with my lungs. They heard a murmur (first murmur heard in 2011 but tests came back all good) and sent me to a cardiologist for testing. After several tests and now having 3 cardiologists, I am on Diltiazem which makes me feel better. Now they want me to take Camzyos. I wasn't too impressed with the cardiologist explaining it to me so I am getting a second opionion at the only Center of Excellence in my area. When I asked if I would keep taking the Diltiazem he originally said yes, you can still take that. Then after some discussion I asked again and he said you can stop that if you want. I am really going to need better information than that. And I will say he wasn't too happy to be answering questions and really seemed a bit shaky about the questions. I sort of felt like they need more people to take Camzyos and join the "program". Anyone else have an experience like this?
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3 ReactionsHello Mandy Sue,
Thanks for your note. It’s difficult to get a heart condition diagnosis and fully grasp the severity and extent of the situation. I am still learning. Did your testing include a stress echocardiogram? I am scheduled for that in a few months. I am also taking Ditiazem 120 mg and do okay with that but anticipate a different medication down the road.
I’m sorry your trip to Chicago was difficult for your breathing. That had to be alarming.
Regarding your doctor- if you feel that you don’t have the information you need and unheard, you deserve better.
I hope your breathing is better now. Warmly, Margie
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1 Reaction@dp80 you are 100 percent correct and O will keep encouraging my sons to have an echocardiogram.
They are grown men and we are blessed with five grandchildren. My sons have the obligation to make that decision. I will keep encouraging them. Thank you again. I will talk to their wives to see if they will help facilitate appropriate next steps.
Best, Margie
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1 Reaction@dp80 and @margieinsb Your conversation together has been so mutually supportive and helpful! This last part about your family - have either of you considered genetic testing? If your "naughty" gene is among those known to cause HCM, all blood relatives can be tested to see if they have the gene. Those who have it can be monitored with necessary treatment if/when needed. Those who do not, need not worry about it. Now, after my septal myectomy, I was tested and my "naughty" gene was not among those known to cause HCM. It just has not been discovered yet. Therefore, my son and grandson get echoes on a regular basis, my grandson more often because he is a teenager. Here is an article that you may choose to read to learn more about genetic testing. https://mcpress.mayoclinic.org/healthy-heart/hypertrophic-cardiomyopathy-which-screenings-do-i-need-and-how-often/ (Scroll down to find the genetic testing part)
@mandysue This is more information to process! Yes, this can be overwhelming, I assure you that in due time you will process it all! I am so very glad to read that you are going to a COE, you and your heart deserve the very best! It is so, so important that your cardiologist is very well versed in HCM. You may even decide to transfer your cardiology care to the COE.
We are fortunate, indeed, to live in times where HCM for most of us is a controlled chronic disease and we are leading our best active lives.
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