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@mollybo

I am trying to advocate for my mother-in-law who was diagnosed with hypertrophic obstructive cardiomyopathy several years ago. She recently had an echocardiogram because she was having pretty severe chest pain. Her first test came back with a gradient level of 160 (normal is 10) (I am not sure if this is how you explain these results correctly). They did another test a few days later and it came back at 60, still very high. She is very healthy and athletic, thin, eats clean, etc. Her cardiologist told her she has to have open heart surgery in the next two weeks at The Mayo Clinic. This was three weeks ago. My question is this- what is the protocol for surgery? Almost three weeks ago, when they caught this, her doctor told her that if she had gone on a trip she was scheduled to take today, she probably wouldn't have come back. However, they haven't done anything to monitor or move forward with next steps yet. She does not have a heart rate monitor or a defibrillator at home and has just been told not to leave her house or do anything that could cause her heart rate to rise. Everything that needs to happen has yet to happen. We know my father-in-law is not a good advocate because he is nervous and puts all of his trust in the medical system without questioning anything. To my husband and myself, this surgery should have happened or should be scheduled to happen now. With some pushing from us, she finally called them back instead of waiting for them to call her and they scheduled lab work for NEXT WEDNESDAY and a heart catheterization NEXT THURSDAY to be sent to Mayo. Then she said she is "hoping to have the surgery scheduled within two weeks." That is what she was told three weeks ago. What is she supposed to do in the meantime? What if something happens in the meantime and should that be a concern? Is this normal to wait this long and have such long gaps in care? She (my FIL) will not put our names on her records to share info so is there anything we can do from this position? We don't want to stress them out more but we also don't want them to be passive in her care. Thanks for any input.

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Replies to "I am trying to advocate for my mother-in-law who was diagnosed with hypertrophic obstructive cardiomyopathy several..."

Thank you i read what i could understand☺ when I went to get my first Echo after my first surgery the guy that did my echo said he couldn't even tell a surgery was performed because I had no scarred tissue. After my surgery I still felt really sick I felt like I was still dying I told my Dr and my mom they told me that it was because I just had open heart surgery but the symptoms persisted so my cardiologist gave me an echo and determined the surgery was unsuccessful then we made arrangements for me to go to the Mayo Clinic to have it performed correctly. I know that the muscle couldn't have grown back in that short amount of time the surgery was not done correctly and I was just trying to figure out what  would have happened? Thank you for all your answers to your questions I appreciate them

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