HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young @colleenyoung, Oct 25, 2016

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?

Hi, Dave here. I am 56 and was diagnosed with HCM last year while dealing with A-Fib. Looking back now my doctors think my A-Fib (last year), High Blood Pressure (diagnosed 6 years ago), and mitral valve regurgitation (8 years ago) are all from the HCM. I was cardioverted last year to get back in rhythm but have continued with severe fatigue and pressure when doing activities. At my annual A-Fib check they did more testing (Echo, Stress, and MRI) and said my HCM has increased to being obstructive. I am scheduled next week (10/31) for pre-op and then a septal myectomy on 11/1. I am looking forward to feeling better (not relishing the thought of surgery) but this site has helped me to hear the results many of you have received. Thanks for the encouragement and the updates! I plan to do my part as well going forward to help others facing this prospect. Dr. Schaff is my surgeon and I am very pleased with what I have read and heard from all of you regarding the good care at Mayo. Thanks, Dave.

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I have a Cardiologist from Souix Falls I see, but I’m starting to think of getting a different Cardiologist, cause I just had to go to Court today cause I was sued by a Collection Agency that took over the collections from the bill I got from him. I just don’t think he’s worth seeing if I’m gonna end up going to court over it…we really can’t afford that right now. And well I do live in Minnesota as well, but The Mayo Clinic is about a 4 hour drive from here. 🙁

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I think its worth the drive – Mayo has a lot of regional offices and I’m sure you can go to Rochester once a year and then see a “Mayo approved” local cardio at one of their regional offices. Oh, and it might be cheaper too.

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@cynaburst

One more thing I wanted to mention – many of us here (including my neighbors here in Southern California @mbcube and @1949 (Tillie)) live some distance away from Mayo. We all have local physicians here in our home area and travel to Mayo periodically, or as needed. Marc (@mbcube) and I both had myectomy surgery there some years ago while Tillie is on her way there in a few months for her myectomy.

It is not unusual for people with HCM to have an expert who they travel to see when they get into trouble, and a local doc who helps them manage the day to day.

Many of us don’t have someone like Dr. Tajik (who used to be at Mayo) living nearby like @onewholovesrock, so we must travel to consult with the Mayo docs who have such a wealth of HCM experience.

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I’m sure you saw this, but thought I’d share for others in the same situation.
http://www.mayoclinic.org/documents/commercial-insurance-plan-contracts-minnesota/doc-20203720

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@cynaburst

One more thing I wanted to mention – many of us here (including my neighbors here in Southern California @mbcube and @1949 (Tillie)) live some distance away from Mayo. We all have local physicians here in our home area and travel to Mayo periodically, or as needed. Marc (@mbcube) and I both had myectomy surgery there some years ago while Tillie is on her way there in a few months for her myectomy.

It is not unusual for people with HCM to have an expert who they travel to see when they get into trouble, and a local doc who helps them manage the day to day.

Many of us don’t have someone like Dr. Tajik (who used to be at Mayo) living nearby like @onewholovesrock, so we must travel to consult with the Mayo docs who have such a wealth of HCM experience.

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Yes, thank you-it is important to have this information. There is so much on Mayo’s website that people don’t realize is there! The cost is what is killing me. If Mayo remains out of network, the cost will be prohibitive, yet I have no choice. Really awful. Still 2+ years away from Medicare where I can go to Mayo, so need to find a way to get through until then. I am looking to the Hypertrophic Cardiomyopathy Association to give me an assist here in getting the insurance company to recognize them as in-network for me because of the HCM.

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@cynaburst

One more thing I wanted to mention – many of us here (including my neighbors here in Southern California @mbcube and @1949 (Tillie)) live some distance away from Mayo. We all have local physicians here in our home area and travel to Mayo periodically, or as needed. Marc (@mbcube) and I both had myectomy surgery there some years ago while Tillie is on her way there in a few months for her myectomy.

It is not unusual for people with HCM to have an expert who they travel to see when they get into trouble, and a local doc who helps them manage the day to day.

Many of us don’t have someone like Dr. Tajik (who used to be at Mayo) living nearby like @onewholovesrock, so we must travel to consult with the Mayo docs who have such a wealth of HCM experience.

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Normally, you can try and request this, a letter from your doctor (it best to write these for them & have them edit & put it on their letterhead) might be good enough. Do a search of the HCMA site and Google & see if you can get some supporting facts to help support your efforts. The HCMA MAY have a basic letter that they use which may provide the info you need.
BUT – Since your insurance elected to opt out of Mayo, there may be some bad blood here? Hoping the folks who review petitions to go out of network, don’t have a direct order to ban all Mayo requests. Keep us posted!

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So glad to find this group. I was diagnosed with HOCM in 2011 while hospitalized for acute appendicitis. I had a murmur and irregular EKG for years but no one picked up on the symptoms until I exhibited heart symptoms while hospitalized with a perforated appendix. I am now on Norpace and being followed at Mayo Clinic in Jacksonville, Florida.

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@lamborama

Hi, Dave here. I am 56 and was diagnosed with HCM last year while dealing with A-Fib. Looking back now my doctors think my A-Fib (last year), High Blood Pressure (diagnosed 6 years ago), and mitral valve regurgitation (8 years ago) are all from the HCM. I was cardioverted last year to get back in rhythm but have continued with severe fatigue and pressure when doing activities. At my annual A-Fib check they did more testing (Echo, Stress, and MRI) and said my HCM has increased to being obstructive. I am scheduled next week (10/31) for pre-op and then a septal myectomy on 11/1. I am looking forward to feeling better (not relishing the thought of surgery) but this site has helped me to hear the results many of you have received. Thanks for the encouragement and the updates! I plan to do my part as well going forward to help others facing this prospect. Dr. Schaff is my surgeon and I am very pleased with what I have read and heard from all of you regarding the good care at Mayo. Thanks, Dave.

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Welcome to Connect, Dave.
November 1 is just around the corner. You’re in good hands with Dr. Schaff. We’re happy to accompany you on the myectomy journey. You’ll get tonnes of support from this group. Might I suggest you start a new discussion specifically about going for surgery soon. That way you can ask your questions, get answers and support AND the discussion thread will be there to help future new members when they prepare for surgery and post surgery.

Here’s how to start a new discussion
1. Go to the HCM group homepage http://mayocl.in/2eJdqOc
2. Click “START A DISCUSSION”
3. Give your discussion a title (maximum of 70 characters) that briefly describes the topic and will help others find it.
4. Type your message
5. Click “CREATE DISCUSSION”

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Welcome @pbo2016. Good to have someone from Mayo, Jacksonville here to share how things work down there too.

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Hi, I have been diagnosed with Hypertrophic Cardiomyopathy and recently visited the Mayo Clinic in Rochester. I saw Dr. Ommen and his staff. I was very pleased with my visit and the recommendations they made. I may have a septal ablation in the future and would like to know if anybody had this procedure and their experience and outcome.

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Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy at Mayo in Rochester in Sep. 2015. I have been doing well since surgery and am now back to normal life. So grateful to Mayo Clinic! I had midventricular obstruction and an apical aneurysm…. history of Afib and VT…. episodes of TIA….. I underwent a catheter ablation procedure in Taiwan to control my arrhythmias before I ventured out to Mayo last year. I do not have an ICD or pacemaker implanted. I hope to interact more with the rest of you and hope to be a source of help to other HCM patients.

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@vivian88

Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy at Mayo in Rochester in Sep. 2015. I have been doing well since surgery and am now back to normal life. So grateful to Mayo Clinic! I had midventricular obstruction and an apical aneurysm…. history of Afib and VT…. episodes of TIA….. I underwent a catheter ablation procedure in Taiwan to control my arrhythmias before I ventured out to Mayo last year. I do not have an ICD or pacemaker implanted. I hope to interact more with the rest of you and hope to be a source of help to other HCM patients.

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I’ve got apical cardiomyopathy so look forward to hearing what you have to say as I understand apical is quite rare. I’m going to tune in to the Mayo webinar on 2nd November

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