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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 1 4:13pm | Replies (1259)Comment receiving replies
@cynaburst hi my name is Sheryl. I am 75 yrs old. I lost my father when I was 2 and my sister when I was 39. They were both 42 and died in their sleep. Not having an autopsy it is assumed they had hcm. I had a full cardio work up at 45 and cardio said I was the healthiest he had seen. Had ekgs every year but it wasn’t until a new pcp told me to see a cardio because my ekg was abnormal. This was a couple of years ago. Went had tests and was diagnosed with hcm. Saw an electro also and it was decided then nothing more was necessary. Saw the cardio every year, but it wasn’t until this year that after an endoscopy and colonoscopy that there were extra beats the anesthesio heard. My dr had me wear a monitor, an echo was done and everything changed. Seems it got worse after I was told considering my age when it was discovered it would not. I was put on metropol 25 mg, but due to a horrific stomach could not tolerate it and did not take anymore after one dose. I feel worse now than I ever did and am waiting for a pvc ablation next month. I feel overwhelmed, scared and anxious which is not helping my hcm. Dr said I might need a defibrillator, but am taking it one step at a time. I was told an MRI would help, but can’t go there. Thank you for listening. I feel all alone.
Replies to "@cynaburst hi my name is Sheryl. I am 75 yrs old. I lost my father when..."
@luckyhowreyou Welcome to Connect, Sheryl! I am so sorry about the untimely loss of both your father and sister, HCM is a horrible disease! After reading your story, we learn how important it is to be under the care of a HCM specialist, often at a COE (Center of Excellence). Where are you receiving care? You wrote "I feel overwhelmed, scared and anxious which is not helping my hcm." Please believe me that we all share that experience. ((HUG)) You are definitely not alone. We are here. This is a manageable condition when overseen by knowledgeable professionals and many of us have been living with it for a very long time.
We are as unique in each of our HCM as we can be and your treatment will be unique to you. I have an ICD, named Buddy, acquired after a septal myectomy. Please learn all you can about HCM, well informed patients ask the best questions. Here is a place to start: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204.
Please take a deep breath, I like how you are taking it one day at a time.
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@luckyhowreyou Hi Sheryl and welcome to the group. You are definitely not alone. I have lost 3 relatives to HCM and I am now 61. I have been treated for this disease since I was in my 30s. With modern interventions, it is quite possible to live a normal life span with HCM. The key is to be treated by a doctor and at a center that has specific expertise with HCM. That is how I found myself to Mayo Clinic even though I live in California.
I would advise you to take a breath. You are 75 and have probably lived with this condition for years. PVCs are very common in the entire population and not just HCM. They are usually considered harmless.
My suggestion to you is to make sure that you are seeing a HCM expert for a complete evalutation before undergoing any invasive procedures. I have had an implantable defibrillator for 24 years but only got it after seeking multiple opinions. I have also been taking metoprolol for 20 years. It makes you feel a little weird at first but you do get used to it. It is a very useful drug.
Try to reassure yourself that this is not something that developed overnight and you are able to take the time that it deserves to find the right doctor with experience that you trust and go from there. I understand it is hard not to get freaked out. I myself am going through a hard patch right now and I get it. But this post you are responding to is 10 years old and I am still here and have been living with HCM for 27 years. It is definitely a treatable condition.
If you haven't already found the Hypertrophic Cardiomyopathy Association website, that is a great place to find information and HCM experts. 4hcm.org
Wishing you all the best and you are definitely not alone.