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?

@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

Jump to this post

Hi, this is Deb from Iowa! I was diagnosed about 8 or 9 years ago with HOCM, I have a Pacemaker and Defibrillator in place. Waiting for my Cardiologist to make me an appointment with Mayo for a Myectomy. Thank you so much for starting this group!

REPLY

TIP: Setting your email preferences
– Start by following the HCM group http://mayocl.in/2eJdqOc

– Control how many emails you receive by editing your Account Settings here: https://connect.mayoclinic.org/account.
– Learn how to set your preferences http://mayocl.in/2coxXJN

I recommend checking the box that says “ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.” Then your digest emails will be specific to your activity and not include other updates from across Connect.

I hope members will keep the “when someone @mentions me in a post” ticked as the moderators use the @mention feature to bring you into a discussion relevant to your experience. This is what Connect is all about, helping to connect people to help others.

REPLY

@cynaburst Yah I’m going to try & listen in on it if I can. I’m looking forward to it. I signed up for it.

REPLY

Hi, I’m Tillie from California. Thank you for adding me. I found out in 2011 that my brother had HOCM. I was asymptomatic at that time and was told by a local cardiologist that I didn’t have it and never would. I then became symptomatic two years ago and was lucky to find a knowledgeable HCM cardiologist. In June of this year, my cardiologist recommended that it was time for a myectomy. I am scheduled to have one on December 30 at the Rochester’s Mayo.

REPLY
@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I’m tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

Jump to this post

Thanks for the invite. I was diagnosed with HCM in 2010 after a cardiac arrest. I moved my care to Mayo in 2014 and have been managed very well ever since. I have a strong family history of HCM and was misdiagnosed with asthma for 23 years. I don’t have asthma. 😉

REPLY

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.

REPLY
@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.

Jump to this post

Exactly. I feel very fortunate to live 1.5 hours away from Mayo and I have been able to make them my primary cardiologists. For me, sadly, I am trying to find insurance that will cover Mayo in-network and, despite living in Minnesota, no one offers an individual policy with Mayo as in-network THanks for nothing, Blue Cross (who pulled out of the individual market here.)

REPLY

And I still live some distance from my local HCM cardiologist as well. About 2 hours away. I did find a cardiologist in my town who is familiar with the disease and is open to working with my HCM doctor. He is the doctor I will see if something urgent comes up. I find all this to be so complex sometimes, but really lucky to have access to good care.

REPLY

I am so lucky to have the University Of Iowa Hospital and Clinics just 30 minutes away from me. I have had a wonderful cardiologist and now a genetic cardiologist who has taken over my care.

REPLY

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.

REPLY

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. 🙁

REPLY

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.

Liked by Sensation

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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!

REPLY
Please login or register to post a reply.