HCM-ers: Introduce yourself or just say hi

That's good to know that the surgery makes such a big difference. That seems to be the common sentiment.

I had a icd implanted in may of 2021 then a septal myectomy in October of 2021 cause every month I was getting shocked and it would send me into afib, and it’s unpleasant, since the surgery what a difference no shocks and no shortness of breath, dr shaff and his team at the Mayo did a awesome job

Hi! Jake G. here. A diagnosis of HOCM was confirmed in May of this year and I had an ICD implanted on July 20, 2022 so this is all still very new to me. I've had varying degrees of success with cardiologists but have finally found an HCM specialist at University of Texas Health and Science Center San Antonio. I'm in the process of switching cardiologists to the specialist. As near as I can understand it, the decision to insert an ICD was due to an apical aneurysm in my left ventricle and some ventricular tachycardia which apparently put me at higher risk of SCD. Other than chest pain and some occasional bouts with shortness of breath, my symptoms are thankfully mild. From what I've read here and another forum, some people have a myriad of symptoms and I can't imagine how stressful that is for those folks, both mentally and physically.

I'm sure I will have a lot of questions along the way, but I'll start with just one: I read a lot of people that have an ICD and then some time later have a septal myectomy. Enough so that I wonder if a septal myectomy is an eventuality with everyone with HOCM. I guess it makes sense given that there's no way to reverse HOCM but am I correct in assuming that a septal myectomy is likely in my future? Thank you in advance for your response(s).

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?

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?

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

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

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

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

Yes I had apical myectomy