HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

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 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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

fitchizumi | @fitchizumi | Jul 18, 2022

Hi, I haven’t been on for a number of years. I’m Fitchizumi634. Dealing with a lot of problems plus HCM. I don’t know if anybody can help with an answer. My doctor tries to keep my blood pressure in the 140 range I feel the best tthen,but it keeps dropping and if it goes into the 130 or below I get very woozy and lightheaded I can’t even walk straight. I have blacked out a few times, last October in the cardiologist office. Ended up in the hospital my pressure was extremely low. She took me off Valsartan 20 g said to take it if it goes above 150 take the pill. I can’t drive for fear of a BP drop. Dr said to take salt water if it goes below the 140s. Any suggestions?

Colleen Young, Connect Director | @colleenyoung | Jun 19, 2022

In reply to @bxr227 "6weeks ago ,how long has it been since yours?" + (show)

I have not had a myectomy. But I can connect you with others who have. I see you also posted in this discussion.

- What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/

I'm confident fellow members will share more. How are you doing post surgery?

bxr227 | @bxr227 | Jun 19, 2022

In reply to @colleenyoung "@bxr227, when did you have your surgery? How are you doing now?" + (show)

6weeks ago ,how long has it been since yours?

Colleen Young, Connect Director | @colleenyoung | Jun 19, 2022

In reply to @bxr227 "Yes I had apical myectomy" + (show)

@bxr227, when did you have your surgery? How are you doing now?

Debra, Volunteer Mentor | @karukgirl | Jun 11, 2022

In reply to @hazmat1 "Hello, my name is Kate. Driving to Mayo Clinic in Rochester in July for en evaluation...." + (show)

Welcome Kate! You found a place that is full of information about the Mayo Clinic. I had a septal/papillary myectomy in July 2020 with Drs Bagamari and Dearani. We did not drive as we were coming in from far Northern California...close to the Oregon border. We did have a driver from MSP airport to Rochester. Once there we used the shuttle at the Mayo or St. Mary's. We stayed at the Courtyard Marriott, which could not have been more convenient, as it is directly across the street from the front entrance to the hospital. We stayed downtown prior to the surgery, as most all the testing was done at the Gonda or around the Gonda. This was before I knew I had to have surgery. There were numerous hotels connected by skyways and tunnels to just about anywhere you need to get. It's like an entire city underground. And if you even look lost or confused for a second...a very friendly Minnesotan will help. There are very friendly people every where. You can eat (Chester's!) buy chocolate, get coffee and move on to the next test with ease. If you have any other questions, I'd be happy to help. There is nothing like the Mayo Clinic in the world. You will be in the best hands possible!
Debra

janetcf | @janetcf | Jun 10, 2022

In reply to @hazmat1 "Hello, my name is Kate. Driving to Mayo Clinic in Rochester in July for en evaluation...." + (show)

Hi Kate!
Colleen gave you excellent links to check. Rochester has a tremendous number of hotels with a broad range of prices and amenities. We went for a mid-range cost hotel since my surgery was last June and my hubby just needed a place to sleep (we drove since we live in Iowa).

Good luck with your stay. I'd never been to the Mayo system before but they are just awesome!

Janet

bxr227 | @bxr227 | Jun 7, 2022

In reply to @colleenyoung "Welcome @bxr227. I see you're asking fellow members how they are feeling post myectomy surgery. Have..." + (show)

Yes I had apical myectomy

bxr227 | @bxr227 | Jun 7, 2022

In reply to @janicepike "Dr. Schaff did my surgery on January of 9th. For my apical myectomy. He is wonderful...." + (show)

How are yoy

Colleen Young, Connect Director | @colleenyoung | Jun 7, 2022

In reply to @bxr227 "How’s things been since the surgery" + (show)

Welcome @bxr227. I see you're asking fellow members how they are feeling post myectomy surgery. Have you had surgery or will be having surgery for HCM soon?

Colleen Young, Connect Director | @colleenyoung | Jun 7, 2022

In reply to @hazmat1 "Hello, my name is Kate. Driving to Mayo Clinic in Rochester in July for en evaluation...." + (show)

Hi Kate, you must be excited for your evaluation appointment. I'm tagging some fellow members who have had surgery at Mayo Clinic in Rochester who can help answer your questions, like @karukgirl @janicepike @rushtonrocks @lisa7 @mbcube @rrowner2 @angiev18 @janetcf and many more.

For suggestions about hotels and getting around Rochester, etc., you may be interested browsing the topics in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

In particular these discussions:
- Lodging in Rochester when visiting Mayo Clinic MN https://connect.mayoclinic.org/discussion/lodging/
- Tips on What To Do while at Mayo Clinic Rochester https://connect.mayoclinic.org/discussion/tips-for-upcoming-mayo-rochester-visit/

What other questions might you have?