HCM-ers: Introduce yourself or just say hi

@77dhowell - Have you been evaluated at Mayo Clinic? They do a surgery called an apical myectomy which can help people with apical HCM. Mayo is the only place they do the surgery, and it has done miracles for some people with apical HCM.

Here's a video you can watch:

My husband has obstructive HCM. They usually do alcahol abrasive surgery for it. He has trouble with the blood getting out. Tomorrow we follow up with PA.

Love it, after 6.months.out. very grateful...

Hi @choochoo,

How did your husband's appointment go? Do let us know of any updates.

They are not going to do anything right now. They will moniter him for the time being. If things get worse they will see him again. Thanks for info on my kids for getting an echo instead of finding the gene. They recommended we get echo for the kids too. They will treat with meds as well. That's it. I will keep u posted.

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!

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

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?

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.

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 480-301-8484, 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.