HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect – a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

@thiles

I have just been informed I have HCM. The genetic testing was positive. Waiting to here from Doctors. I switch to the Mayo Clinic on Oct 23 2017 after going through a stroke 5 years ago. Then 2 years later I had a SCA was shocked 9 time by EMT’s. Had a ICD implanted at this time, and since then I have been Shocked 15 times in the last 2 years by my ICD. I look forward to learning more from others who have been there done that.

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Hello @thiles,

Welcome to Connect. I can only imagine your worry! I’m tagging fellow Connect members @cynaburst @lynnkay1956 @PatMattos @mistymopps3 @daisygirl to bring them into this discussion and possibly address your concerns about sudden cardiac arrest and ICDs.

In the meantime, I found an interesting journal article about HCM and strokes and/or sudden cardiac death which you may wish to view:https://www.sciencedaily.com/releases/2016/08/160829094043.htm

@thiles, you mentioned, “I have been Shocked 15 times in the last 2 years by my ICD.” May I ask why this occurs so frequently? What do your doctors say about these shocks?

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@cynaburst

You are very lucky to live near one of the best centers for HCM care in the world. If you are able, you could have all necessary testing done at Mayo and forego all the traveling. All of these other conditions could be related to what they are calling HCM. It seems like it would make sense to have it all looked at at once by the same place.

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My husband is a VietNam Veteran and we live in upper Wisconsin. We have been working with the Minn VA. The Cardiologist there said to “find the best place to have the Septal Myectomy – the place where the surgeon has done the most of these surgeries”. So yes, Mayo seems to be the best place however Mayo will not work with the VA to pay for the surgery. I believe Vet Choice is the vendor working with the VA. I have been told by staff at Mayo Cardiology Dept that they will not see my husband. I am very disappointed.

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I am looking for verification regarding Mayo HCM Clinic not participating in Vet Choice program. My husband has HCM and he is being told that he will need a Septal Myectomy. He is a VietNam Veteran and we are trying to find the best place to go to for the surgery because the VA Minn does not have Doctors who can perform the surgery. We called Vet Choice and they say we cannot go to Mayo. Could someone please check with Mayo and see if this is really true. I have contacted Steve Ooman’s office and believe the VA has already forwarded all pertinent information and a CD with testing results. We can’t move forward. We live in a very small city in Wisconsin east of Chippewa Falls. Mayo seems to be the closest and best place for us to go. Please help us get to the bottom of this soon.

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@cynaburst

You are very lucky to live near one of the best centers for HCM care in the world. If you are able, you could have all necessary testing done at Mayo and forego all the traveling. All of these other conditions could be related to what they are calling HCM. It seems like it would make sense to have it all looked at at once by the same place.

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I’m no help in terms of Mayo accepting Vet Choice, but that is disappointing, very disappointing.

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Hi @rmwundrow,

I’m sorry about the frustrations you are experiencing with insurance; @cynaburst, do you have any suggestions?

Here are a few Mayo Clinic resources that you may wish to go through:
– Tricare and CHAMPUS (health care program of the United States Department of Defense Military Health System)
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/champus-tricare

– Patient Account Services
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

I sincerely hope this helps.

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I am aware of some other military families who have been able to consult with Mayo and who have Tricare insurance. If the resources at Mayo Kanaaz referred you to above are not able to assist you, you might want to consult with the Hypertrophic Cardiomyopathy Association = http://www.4hcm.org. I know they sometimes help people access care and deal with insurance companies.

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@cynaburst

I am aware of some other military families who have been able to consult with Mayo and who have Tricare insurance. If the resources at Mayo Kanaaz referred you to above are not able to assist you, you might want to consult with the Hypertrophic Cardiomyopathy Association = http://www.4hcm.org. I know they sometimes help people access care and deal with insurance companies.

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We have Medicare and VA health coverage. Rog is 68 yrs old, not retired from armed services or actice duty . He is a Vietnam Veteran serving in country from 1969 to 1971. I would like information from someone in the know at Mayo who can tell me why or if Mayo is not participating in Vet Choice which is a Federal Program for Vets who need care outside of the VA. This surgery (septal myectomy) is not done by many doctors Mayo”s claim as the best place to go for Doctor who have the most experience perhaps is limited by $’s. That is very sad.

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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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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.

Liked by janicepike

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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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@mollybo – your MIL is lucky to have you in her corner.

Myectomy is considered to be an elective surgery, and its purpose is to reduce symptoms and to eliminate the left ventricular outflow tract gradient that your MIL has. While she does have a significant gradient, people can live with these for a long time. It will just make you feel uncomfortable along the way.

It sounds like her current doctor is being a bit extreme and alarmist. Most people who have HCM and get proper treatment live a normal life span and have a normal quality of life. Though your MIL should be evaluated for her need for an implantable defibrillator, unless she has experienced a sudden cardiac arrest already, the likelihood that she will have one while waiting for her appointment is pretty low. I would not worry about that unless she is in extreme distress or collapses in which case it would, obviously, be an emergency.

Some things that might help you get a handle on the condition are:

A blog that I currently write called HCMBeat – http://www.hcmbeat.com

On that blog I have an entire page of resources for patients undergoing myectomy – http://www.hcmbeat.com/resources/resources-for-patients-about-myectomy. This includes several presentations by docs at Mayo about the surgery.

I also wrote a blog about my own myectomy at Mayo Clinic 12 years ago:

http://www.cynthiassummeradventure.blogspot.com

Another place you may want to visit is the Hypertrophic Cardiomyopathy Association: http://www.4hcm.org

The one thing that you should know is that Mayo Clinic is one of the best places in the world for treating this disease. Though her doctor does not seem too well versed in HCM, he did do the right thing by referring her to a place that is world class.

Wishing you and her the best. Feel free to send me a PM once you have had a chance to look over this info. if you have any questions.

Cynthia

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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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Do you have to take certain classes to do this kind of heart surgery? How would one of these surgeries go wrong and not be a successful surgery

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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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Susan317- If I understand you correctly, as a patient, you do not have to attend classes. As a heart surgeon, you usually study under the watchful eye of an experienced surgeon. It goes without saying that the best outcomes come from hospitals with a high volume of myectomies (or other modality of treatments – such as Alcohol Ablation). As to “going wrong”, well, you have a dozen forms to fill out prior to surgery where they tell you what can go wrong, but it boils down to less than 1 % actually die during surgery. The chief complaint I hear is that the surgery has to be redone later as the surgeon likely removed too little tissue. This is not the case at Mayo or other centers that do a high volume. I’ve seen this many times with patients who have had the surgery at their local medical center with a surgeon who – has done only a few of these.

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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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I agree with Cynaburst. Please remember that doctors have to stress the negative – their lawyers dictate that. In all probability, nothing will go wrong (as nothing has really happened so far) by waiting. I always suggest that if a patient can, avoid surgery during the winter. I’m in CA and have the benefit of 80 degree days in January and if you couldn’t guess by now, I avoid the snow like the Oprah avoids marrying Stedman.
The best part of post-op is getting outside and walking or riding a bike. They force you to get up and walk on DAY ONE post-op and continue this torture till its 3-times a day, each for longer periods. If you are older or “de-conditioned” they will put you in cardiac rehab where you learn to know your limits. The great thing is, you’ll soon see a vast improvement in your ability. you’ll be amazed at how fast the body heals.
Try not to worry – it not helpful for you or M-I-L. Its better to wait until she needs the surgery (Numbers don’t apply to criteria – its more about managing symptoms) and they try to manage this through medication first.

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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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Thank you! I had one done in April and then had to turn around in November and have another one done because I was still really sick when they did my echo from my first open heart surgery it looks like nothing had changed so that’s when I went to Rochester Minnesota the Mayo Clinic which I call Hospital of Gods!!I feel like they saved my life I was just curious on how you can mess one of these surgeries up to make somebody go through another one don’t they measure the muscle that they’re supposed to take out I don’t understand how they messed these up. So i had 2 in 1 year.. I had a really bad case..

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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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WOW – Its not that uncommon when its its first done at a non-COE, but usually it takes a while to get discovered. 2 in a year is rough. Now you can put those behind you & move forward.

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