HCM-ers: Introduce yourself or just say hi

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

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.

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!

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 480-301-8484. You can also request an appointment online, here: https://www.mayoclinic.org/forms/us-resident-appointment.

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!

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?

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?

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?

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.

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