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?

@janemiracle

My daughter diagnosed with HOCM wants to do masters in the US during 2021. What is the kind of medical insurance would she need ? I hear that the medical insurance does not cover existing illness. Can some one advice please ?

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Most universities offer health insurance for international students. You need to get a copy of the policy and read its limits, including the amount of deductibles, copays, and what is covered and not covered, including pre existing conditions. Please do not rely on what a college admissions officer says. The insurance policy is a contract and will control what is covered. Each policy is different. Welcome to the US, where health insurance and care is a nightmare!!

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@lailaamin

I do not like the recliners either I have just recently sold mine since it was only a few months old but it made my recovery so much easier. The surgery and postop it’s not easy but it’s well worth it and like I said before you are in the best hands in the country

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Well, after all the recliner, recliner, recliner talk…I broke down and we purchased one from our local Lazy Boy. It's an "electric chair". Just what I need I suppose. I think after I've gotten what I need from it I will pass it along to my 92 year old dad. He'll get a kick out of it.
Thanks for your response. That's one more thing I can check off my list! Best Regards

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My daughter diagnosed with HOCM wants to do masters in the US during 2021. What is the kind of medical insurance would she need ? I hear that the medical insurance does not cover existing illness. Can some one advice please ?

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Hello @janemiracle,

I moved your message to this discussion so that people could read more of your post to help with your question about insurance. Simply click VIEW & REPLY in your email notification to find your post.

At most U.S. universities, health insurance specialists are usually available to advise students about their options. Health insurance policies and costs can vary quite a lot, and requirements may also depend on your daughter’s visa category.
Here is an article with some more information: https://www.usnews.com/education/best-colleges/articles/2019-02-12/what-international-students-should-know-about-health-insurance-in-the-us

@janemiracle, when was your daughter diagnosed? How has she been managing her condition?

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Hi Wayne here .I live in Ontario Canada and have HCM. So happy I found you and feel I have people I can relate to. I am in need of a total knee replacement and Dr.s are worrying me with the risks.

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@riderwayne

Hi Wayne here .I live in Ontario Canada and have HCM. So happy I found you and feel I have people I can relate to. I am in need of a total knee replacement and Dr.s are worrying me with the risks.

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Hi Wayne
I have HOCM and had a total knee replacement in august 2018. My docs knew of my heart condition and my surgery was in a larger hospital with good cardiac support.
All went well.
I was very glad to get it done and out of the way
Good luck

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@rrowner2

Hi there, My husband had septal myectomy at Mayo in Rochester Dr Schaff was his surgeon. He was diagnosed with HCM at 43 and was 74 when he had the surgery. Despite the ever increasing symptoms was still quite active. Earlier in the year he had a complete heart block and had a pacemaker/ defibrillator implanted, his HCM became obstructive to the point of several episodes of syncope. His cardiologist in San Diego recommended Mayo but we had done lots of research so Rochester it was.
His surgery went well was in hospital for 4 days traveling home 2 days later.
I think he will now acknowledge how sick he was and how amazing he has felt since.
I’m a former nurse so was worried about his recuperation, but he was fine took about 6 weeks to resume normalcy.
One thing I don’t see mentioned on this site is the emotional effect of open heart surgery my husband had several days of depression so be aware and get help for that.
Wishing you all the positive thoughts in the world
Maureen

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Thank you for sharing your story. I'm happy your husband is doing so well. It's encouraging to hear these stories and have the benefit of being able to "look back", hindsight I suppose, and help others who now face what you have already gone through. I have read about how common depression is in recovery, and glad it didn't last long. I suppose it's helpful to know all the things, good and bad, that go along with something so major. Thank you for sharing. I appreciate the information. Best regards

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@karukgirl

Thank you for sharing your story. I'm happy your husband is doing so well. It's encouraging to hear these stories and have the benefit of being able to "look back", hindsight I suppose, and help others who now face what you have already gone through. I have read about how common depression is in recovery, and glad it didn't last long. I suppose it's helpful to know all the things, good and bad, that go along with something so major. Thank you for sharing. I appreciate the information. Best regards

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Thank you, you will get lots of support from this group so stay in touch. Take care
Maureen

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@bbonchek

Hi Wayne
I have HOCM and had a total knee replacement in august 2018. My docs knew of my heart condition and my surgery was in a larger hospital with good cardiac support.
All went well.
I was very glad to get it done and out of the way
Good luck

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Thank you. Where did you get yours done?

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@riderwayne

Thank you. Where did you get yours done?

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A small specialty group in Indiana
Midwest Center for Joint Replacement
There are many good docs that work from big hospitals
I just had a septal myectomy at Cleveland Clinic
You may want to go somewhere like that
I would love to personally talk to you if you want

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@bbonchek

A small specialty group in Indiana
Midwest Center for Joint Replacement
There are many good docs that work from big hospitals
I just had a septal myectomy at Cleveland Clinic
You may want to go somewhere like that
I would love to personally talk to you if you want

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Ps I am from southern Indiana

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Hi I’m Terry and I live in Michigan. I’ve known I have HCOM for 9 years. First discovered during Ecco To prepare for blood cancer treatment. I knew there was an issue but doctors said it was anxiety. I have a small aneurysm and scarring. I have a defibrillator implanted. I tire easily! I go to U of M and Cleveland alternately. Doing ok. Just too chunky!

Liked by Lisa Lucier

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@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

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Hello Cynthia! Terry from Michigan ❤️

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@terryviazanko

Hi I’m Terry and I live in Michigan. I’ve known I have HCOM for 9 years. First discovered during Ecco To prepare for blood cancer treatment. I knew there was an issue but doctors said it was anxiety. I have a small aneurysm and scarring. I have a defibrillator implanted. I tire easily! I go to U of M and Cleveland alternately. Doing ok. Just too chunky!

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Welcome to the group Terry

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@rrowner2

Thank you, you will get lots of support from this group so stay in touch. Take care
Maureen

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Well, just like I didn't see HOCM or Open Heart Surgery in my future, and just when I believed I had accepted the plan…COVID-19 mass hysteria manifested. Didn't see that one coming. So yesterday, literally, 8 hours before our trip to Sacramento International, we made a decision to cancel. I felt deflated like a balloon. After the US Surgeon General, Dr. Adams, was urging hospitals to cancel all non-emergent cases, and then met with the leaders in AHA and President Trump urged state Governors to urge hospitals to cancel cases, I wondered if mine would be cancelled. It was to be this Friday, March 20th. Then all the shut downs started in our State. And the talk of the chance of domestic travel restrictions from certain areas. Probably California, although we are in Northern California and not like the rest of the state. I communicated with Mayo Clinic Cardiovascular Dept. yesterday and they completely understood, so we are scheduling another surgery in the next 8 weeks or so after this virus loses power. I can't describe how stressful it's been, but I am not in control. God is. Trusting is my job. He has the rest. Thank you for all the great support, thought I'd give an update. I also have a little "cold" right now so really all the signs were there, and cancelling, though a difficult decision, seems like the right thing to do. Probably a bad idea to have open heart surgery and be traveling during a global pandemic, which looks to peak when I would be coming home, during massive shutdowns, travel advisories, and public hysteria. Looks like I get to stay on the rollercoaster longer!

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