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Hi. I am from jalpaiguri West Bengal India. I have hcm unobstructive detected in 2017.I am 45yrs old and totally shattered by the disease diagnosis

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.

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.

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.

Hello @mollybo,

Welcome to Connect; thank you so much for sharing your mother-in-law's information. Before anything else, I'd like to reassure you that she is in the best hands at Mayo Clinic which is ecognized as one of the top Cardiology and Heart Surgery hospitals in the nation. Here's some information about hypertrophic cardiomyopathy care at Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what your mother-in-law is experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones' experiences.

You may also wish to view this discussion – “Diagnosed with HOCM last year. May be time for surgery” https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/, where you will meet @tkterrell @choochoo @debcrawford @daisygirl @quinn @lina2017 @lynnkay1956, and Mentor @cynaburst talking about HOCM.

@mollybo, it can be so stressful when loved ones have health problems, and we naturally feel a sense of urgency to get them the necessary treatment. While we wait for @cynaburst and fellow members to respond, I'd encourage you to read a bit about the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/hypertrophic-cardiomyopathy-clinic/overview, and keep talking and asking questions – the Connect community is listening.

Hello @mollybo,

Welcome to Connect; thank you so much for sharing your mother-in-law's information. Before anything else, I'd like to reassure you that she is in the best hands at Mayo Clinic which is ecognized as one of the top Cardiology and Heart Surgery hospitals in the nation. Here's some information about hypertrophic cardiomyopathy care at Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what your mother-in-law is experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones' experiences.

You may also wish to view this discussion – “Diagnosed with HOCM last year. May be time for surgery” https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/, where you will meet @tkterrell @choochoo @debcrawford @daisygirl @quinn @lina2017 @lynnkay1956, and Mentor @cynaburst talking about HOCM.

@mollybo, it can be so stressful when loved ones have health problems, and we naturally feel a sense of urgency to get them the necessary treatment. While we wait for @cynaburst and fellow members to respond, I'd encourage you to read a bit about the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/hypertrophic-cardiomyopathy-clinic/overview, and keep talking and asking questions – the Connect community is listening.

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.