HCM-ers: Introduce yourself or just say hi

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,

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?

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

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!

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.

Hi @choochoo,

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

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

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.

@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:
https://www.youtube.com/watch?v=-6lqhSCxmZw

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