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?

Hello, I am new to the Phoenix/Scottsdale area, and I have HCM. I have recently tested positive for Scleroderma which causes Cardiomyopathy. I’m not sure if I have it from the Scleroderma or from my mother who had HCM but she lasted until the age of 94. I have had this cardiac problem since my 30’s. I have symptoms which are shortness of breadth, and skipped beats, I have recently been diagnosed with a 1.6 mil mass in my colon, and it was suggested that I have a Colonoscopy to have it either be removed or biopsied. I am afraid of having bad side effects to the anesthesia as I have never been operated on in my life. I am 70 years old. Can someone suggest a top dr. at the Az Mayo Clinic that i can go to before I have these procedures done. Thank you!

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@joyful1

Hello, I am new to the Phoenix/Scottsdale area, and I have HCM. I have recently tested positive for Scleroderma which causes Cardiomyopathy. I’m not sure if I have it from the Scleroderma or from my mother who had HCM but she lasted until the age of 94. I have had this cardiac problem since my 30’s. I have symptoms which are shortness of breadth, and skipped beats, I have recently been diagnosed with a 1.6 mil mass in my colon, and it was suggested that I have a Colonoscopy to have it either be removed or biopsied. I am afraid of having bad side effects to the anesthesia as I have never been operated on in my life. I am 70 years old. Can someone suggest a top dr. at the Az Mayo Clinic that i can go to before I have these procedures done. Thank you!

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Dr. Steve Lester is the HCM specialist at Mayo, Scottsdale. Here is his information:

http://www.mayoclinic.org/biographies/lester-steven-j-m-d/bio-20053672

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Hello @joyful1,

Welcome to Connect. What a lovely username!

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is more information from Mayo Clinic:http://www.mayoclinic.org/diseases-conditions/scleroderma/home/ovc-20206014

@mooneagle @dash99999 @sebley12 have talked about scleroderma, and I wonder if they would have some more insight for you.

@joyful1, are you experiencing any symptoms with regard to the mass in your colon? Have you seen a gastroenterologist?

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@kanaazpereira

Hello @joyful1,

Welcome to Connect. What a lovely username!

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is more information from Mayo Clinic:http://www.mayoclinic.org/diseases-conditions/scleroderma/home/ovc-20206014

@mooneagle @dash99999 @sebley12 have talked about scleroderma, and I wonder if they would have some more insight for you.

@joyful1, are you experiencing any symptoms with regard to the mass in your colon? Have you seen a gastroenterologist?

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I would like to speak to someone regarding doctors to go to as I am new to the Phoenix/Scottsdale area. I am having pain, and discomfort on my right side of my abdomen, and I don’t know what Dr. to go to. I don’t want to go to the E R!

J.P.

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Hello @joyful1,

Mayo Clinic has just been ranked the best hospital in the nation by U.S. News & World Report in their 2017-2018 rankings. The campus at Scottsdale, Ariz., is also ranked among the Best Hospitals for digestive disorders.

Mayo Clinic’s model of care is defined by teamwork, and the Division of Cardiovascular Diseases at Mayo Clinic offers special disease and condition-related groups, which bring together the expertise of many specialists to evaluate and treat patients.

For appointments and more information about the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic’s campus in Arizona, you can call the Central Appointment Office at 800-446-2279 (toll-free), or complete an online appointment request form. More details regarding appointment information for Arizona can be found here http://mayocl.in/1mtmR63.

@joyful1, you will notice that I removed your personal information (phone number) from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted calls, spam etc. Thank you for understanding.

Please let us know if you have any further questions.

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Hello I am Jeff. 6 months out from septal Myectomy.

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My Name is Jenniffer. Im a 46 year old with Porphria and hemomchromotosis. My interests are my family, gardening and playing cards. I’m hoping to connect with others who share in my diagnosis and build friendships and support.

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Hello, I need a referral to a Colorectal surgeon for the mass on my colon. I’ve waiting too long to have a colonoscopy done! Would you know about which type of physician I should have to do a colonoscopy? Please write back a.s.a.p. as I need to do this a.s.a.p. I am not felling well!

Thanks!

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Hello @joyful1,

If you are in need of a colonoscopy, a gastroenterologist is the preferred specialty as they perform more colonoscopies than any other specialty, and have years of additional training in scoping procedures. Studies have shown that gastroenterologists have a higher rate of colon polyp detection.
If a gastroenterologist finds a polyp during a routine colonoscopy, he or she will remove it and take a biopsy. If the biopsy comes back positive for cancer, then the patient is referred to the colorectal surgeon to do the actual surgical removal of that portion of the colon.

Here are a few additional guidelines from the American College of Gastroenterology (ACG) https://patients.gi.org/gi-health-and-disease/your-doctor-has-ordered-a-colonoscopy-what-questions-should-you-ask/
– Is the doctor performing your colonoscopy a Gastroenterologist?
– How many colonoscopies has the doctor performed?
– How many perforations has the doctor had?
– How often does your doctor complete the colonoscopy?
– Can the doctor remove polyps from your colon?

We cannot give medical advice or provide referrals on Connect; if you would like to make an appointment at Mayo Clinic, Arizona please call 800-446-2279. You can also request an appointment online, here: https://www.mayoclinic.org/forms/us-resident-appointment.

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@kanaazpereira

Hello @joyful1,

If you are in need of a colonoscopy, a gastroenterologist is the preferred specialty as they perform more colonoscopies than any other specialty, and have years of additional training in scoping procedures. Studies have shown that gastroenterologists have a higher rate of colon polyp detection.
If a gastroenterologist finds a polyp during a routine colonoscopy, he or she will remove it and take a biopsy. If the biopsy comes back positive for cancer, then the patient is referred to the colorectal surgeon to do the actual surgical removal of that portion of the colon.

Here are a few additional guidelines from the American College of Gastroenterology (ACG) https://patients.gi.org/gi-health-and-disease/your-doctor-has-ordered-a-colonoscopy-what-questions-should-you-ask/
– Is the doctor performing your colonoscopy a Gastroenterologist?
– How many colonoscopies has the doctor performed?
– How many perforations has the doctor had?
– How often does your doctor complete the colonoscopy?
– Can the doctor remove polyps from your colon?

We cannot give medical advice or provide referrals on Connect; if you would like to make an appointment at Mayo Clinic, Arizona please call 800-446-2279. You can also request an appointment online, here: https://www.mayoclinic.org/forms/us-resident-appointment.

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Hi Kanaaz, Can you please tell me how I can get in touch with you outside this group? I have a few things I would like to discuss with you but not here in the open public.

Thanks!

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@ruettj

My Name is Jenniffer. Im a 46 year old with Porphria and hemomchromotosis. My interests are my family, gardening and playing cards. I’m hoping to connect with others who share in my diagnosis and build friendships and support.

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Welcome to Connect, @ruettj, We’re so glad you’ve joined us!

Jennifer, might I suggest that you also post your message in the Digestive Health group on Connect, https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/.
That way you will be able to meet other members with similar conditions, since we have a few active discussions about hemochromatosis in Digestive Health:
https://connect.mayoclinic.org/discussion/my-husband-inherited-hemochromatosis-diagnosis-about-a-yr-ago-that-required/
https://connect.mayoclinic.org/discussion/looking-for-advice-i-am-37-years-old-for-the-last-two-years/

You could post your message in either of the above discussions, and the members in that group will be notified of your post. Or, you could start a new discussion.

@ruettj, if you are comfortable, would you share a few more details about the Porphyria you’ve mentioned? I like playing cards as well…I’m not sure about the exact name of the game, but I love “3-card poker”. Do you have a favorite?

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@seidel9432

Hello I am Jeff. 6 months out from septal Myectomy.

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Hi Jeff, @seidel9432,

Welcome to Connect; thank you so much for joining us here.
How are you feeling after the myectomy? If you are comfortable, would you share your insights with us? What questions do you have for the Connect community?

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@seidel9432

Hello I am Jeff. 6 months out from septal Myectomy.

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Hi Jeff. I also had a myectomy 11 years ago and am feeling much better even still. Have you noticed improvement yet? Where did you have your surgery done?

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Hi @joyful1,

The benefit of sharing in the community is that you can receive information and support from a knowledgeable group of people. Also, keep in mind that I’m not a medical professional, and cannot provide medical advice. Should you still wish to contact me, you can send me a private message. Simply click on my username, and then click “Send Private Message”. I will do my best to address your concerns.

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@seidel9432

Hello I am Jeff. 6 months out from septal Myectomy.

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I had the exact same procedure, in January 9, of this year. Feeling fantastic, and had a remarkable recovery.

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